I have had enough, totally and utterly. I want my health back; I haven't been right since the summer when my thyroid fluctuated and I am now dealing with a whole new ball game with Hashi's. I am sat here starting to write a heartfelt letter to my fave GP which I am going to hand deliver tomorrow when the surgery opens and I NEED YOUR HELP TO WRITE IT PLEASE.
I am awful with words, I can't get them out in the right order most of the time or I say the wrong thing and cause offense. Please can you guys help me me write the letter I intend to deliver tomorrow. Yes it will be a begging letter but that is how desperate I am now. If I can't get the help I need from my GP, or even referred to a specialist, then I am at the point where I am willing to contact all tv/radio channels and beg for help that way. I am turning into erin brockovich lol
I need my GP's to stop thinking it's just depression and anxiety when I contact them. Just because I have a long history of it, whenever I do need a visit, they auto focus on that and can't look out of the box; so very blinkered. I need my doc to see that it's NOW an autoimmune thing and standard thyroid blood tests just don't cut it anymore.
I need professional help which starts with certain blood tests to be done, the results of which I can share with you guys and find a starting point in helping myself. Still learning but I know I need to be checked for leaky gut. I believe there is also a test to check for parasites in the gut but know no more about that. I would like a gluten test to see if I am sensitive but I may well have to go private for that unless that is available on the NHS. I can't afford to many private bloods but mum and dad are very worried about me and said I am to do what I need to do (just like John Wayne did lol) and they will help me out. What other blood tests should I get done please?
My male doc treats me more as a friend than a patient so I feel he will make the effort more. I bumped into him a couple of days before Christmas in Sainsburys and he knew I wasn't well and I teared up in front of him. It was his day off so I insisted not talking shop to him there and then. I am no longer going to see the female doctor as she dismissed Hashi's until I produced my own private bloods to prove otherwise. Not the first time she has messed things up with me but it will be the last.
After an awful few days of very severe anxiety, palpitations, fatigue, you name it, the symptoms have subsided (although still present). I now have a bit of an ache in my kidneys and my tummy feels a little sore and I still have nausea. I am phoning the surgery in the morning to see if I can get in for a quick urine test to see if I have a mild kidney infection - am weeing a lot although I am drinking lots of water, temp is also fine, appetite isn't very good
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Jefner
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You have my sympthies. It's horrible being so unwell. I know what it's like to have all the symptoms you describe. It seems like GP's just put symptoms down to anxiety or mental health conditions because they don't know what to do with patients who don't get better on thyroid tablets! I've found it's helped a bit to start taking vitamins. I don't know much about it but other people on this forum do.
Hang on in there...research vitamins and ask GP to help check out vitamin levels. Could start with iron levels, they might have already checked them. Could you find out?
Had quite a few checks done in October. Vit D ok, B12 in range but other members said it really needed upping. Was supplementing that until severe anxiety hit me so decided to stop those for a few days. I just need to know what other blood tests I can ask for so I can find out if I have gut issues to self help
Perhaps you could start your letter by saying that your aim is to stay as well as possible and you're prepared to put in the hard work and research but you need their help to do the relevant tests and find out as much as possible about why you're getting symptoms and what your options are to resolve them?
Could you list the symptoms that are bothering you and ask how they would normally investigate each one?
Just because you had severe depression doesn't mean the anxiety should be dimissed. It might not be caused by the same thing as depression. It could be a response to a fast pulse rate for example or some other physiological action.
Scientists are finding out so much about how finely tuned our endocrine system is.
Just from my obervations, a person could get depressed because they feel terribly ill and don't know why and the doctors keep telling them their blood tests are fine so they have to keep going and don't know how to explain to friends, family or colleagues what the problem is. But anxiety could be caused by a physical problem such as a rapid heartrate or some kind of other physiological imbalance rather than social pressures.
Could you ask what kind of options there are for managing anxiety and think about what might suit you best?
self help is really the only way to manage anxiety. I learned relaxation techniques many years ago when my panic attacks and agoraphobia was bad. After around 30yrs of suffering, my counsellor put me on Seroxat which was slated in the press but worked wonders for me. Been on it for 15yrs and it suppressed all my anxiety symptoms and I felt free for the for the first time in all those years...THEN....I get the thyroid problems and off we go again
The seroxat and others are endocrine disrupters. ..not a good thing, masking a problem, not fixing it. I was on anti depressants and antianxiety meds for years..i believe they are what made me develope hashi's in the first place, at least, in part.
I have joined Dr. Isabella Wentz's emails . She tells you how to get rid of your Hashi's by healing your immune system. Getting rid of it , is the only way that i will feel well again, i know that. I have tried every type and dose of thyroid meds. The immune system is almost all in the gut. Mine have terrible symptoms, reflux, non digestion, vomiting. I have no good gut bacteria and not enough digestive enzymes. The doctor feels if i heal my "leaky gut", i will put my hashi's into remission, getting off thyroid meds too.
i actually don't see the exact thing i signed up for, it was more than the free chapter of the book, then the emails stopped coming. It was a step by step guide on where to start when you have hashi's, step by step on how to get rid of this cursed disease. Look thru the website and see if you can find it.
I am pretty sure making such a huge change to your diet will initially cause problems. I have been watching Dr David Clark's vids on YouTube and he said the same
thats good to know, that someone else thinks that is what is happening too/ We had food sensitivities testing, a year and a half ago, so that is when we changed our diets, but 2 months ago, we started taking the prescribed supps.
Jefner, You said you eat what you like and don't have digestive issues so it's highly unlikely you have coeliac disease, parasites or leaky gut. I'm not sure there is even a test for leaky gut which isn't a recognised medical condition.
Hashi's can exacerbate depression and anxiety but there is no cure for Hashi's, the symptoms have to be managed. You can help yourself by seeing whether symptoms improve when you try a gluten-free diet without testing. If there's no improvement in 3-6 months reintroduce gluten.
B12 was low so you should supplement B12 and B Complex but it will take 6-8 weeks to notice improvement.
Palpitations can be due to anxiety, Hashi's &/or low ferritin. Your ferritin was suboptimal so you could supplement iron too. Take each iron tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.
FT3 was less than halfway through range and will be lower after your dose reduction so you might benefit from the addition of some T3 to a reduced dose of Levothyroxine. Some CCGs will not permit GPs to prescribe T3 without an endo recommendation so you may have to wait months for an endo referral with no guarantee T3 will be prescribed, or buy on the internet and self medicate.
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 honey, my palps eased off until I had my dinner (fish in breadcrumbs and baked beans). I don't normally have digestive problems but I must admit I do tend to get hyperglycemic quite often and not long after a small piece of cheese I feel OK again. Never thought I was coeliac hon, isn't leaky gut different to that or are they one in the same?
The tests for leaky gut involve a stool sample. It was icky! My son and i had it done, i think Flower did too. When you have autoimmune disease, you have leaky gut...period. It means whatever is ingested, effects your immune system. Its also known as Intestinal Permeability.
The tests also help determine what bacteria is lacking, if there is bad bacteria, what kind, digestive enzymes etc.. There is also bacteria, that is connected to mental health disorders like schizophrenia and depression, as well as the issues with the gut, that cause neurotransmitter problems, which show up as anxiety and ocd. Also, effecting your cortisol levels too.
My son and i are on a protocol now, it is said to take care of my adrenal issues, mental stuff and to heal the intestinal lining and put the Hashi's into remission and hopefully keep my son from getting autoimmune issues.
was that a test you requested from you doc or was it suggested by your doc? I think I need to add that one to my list when I go and see him next week for my results as my tummy is rather icky and sore for the last few days, although I used to get that a lot anyway years ago when my anxiety was always high and I was underweight due to the constant nausea and not eating much. I think I am paying for it now.
I have a lot of notes to make for when I go back and see him. OMG you guys are so wonderful in helping each other and I am so grateful for all your help and advice. I have to get myself better, I just have to. I know this disease is for life and if I don't take control of it now, I will end up with more problems when I can't even handle the ones I have.
Unfortunately, these tests were ordered by a Functional Medicine doctor..i have been to at least 30 others, including GI doctors and 5 Endocrinologists and not one ordered these tests. They are not covered by Insurance either. They are not recognized by mainstream medicine, anywhere. They were suggested by Isabella Wentz too and are part of what she did to heal her gut. I also had Urine and Saliva tests, for Cortisol and Neurotransmitters. I am in the US.
Jefner, you Don't need a test for Coeliac - they aren't reliable anyway - just try going gluten-free for a couple of months, as Clutter said. If it helps, then stay gluten-free. If it doesn't, then go back to eating gluten. For myself, I stuck at it for three months, and it did nothing for me. Neither did dairy-free, nor sugar-free. But that's just me. You might find, with experimenting, that one of them does work for you. But no doctor can help you with that. They Don't have a clue! No matter how nice they are.
So, Don't bother begging for a Coeliac test. What you really want is an FT3 test, but I doubt if you'll get it on the NHS. If you're going to get private tests, go for that one. You know your Hashi's, no point in testing that again. I really can't think what else you can ask for apart from vits and mins.
However, you could try telling your doctor that anxiety and depression are not diseases, they are symptoms. And, as you know you are Hashi's/hypo, that's more than likely the reason for you symptoms of anxiety and depression.
But, I Don't really understand what you mean by your 'thyroid fluctuating'. Can you explain that, please? It might give us a clue to the problem.
So, you're supplementing your B12 and your iron, is that right? Are you taking anything else? How is your vit D? Are you taking vit C with the iron? What are your latest labs like?
When i said fluctuating i meant when i went hyper from hypo about 3months ago. I did start the b12 and b complex but when my awful anxiety came back before christmas i mentioned it and clutter said to leave off for a few dys to see if my anxiety lessened. Have started a vit c supplement as my tummy is a little nervous at moment so not getting any fruit down me. See my latest ",OMG" post hon about what happened this morning when i spoke with doc
Will do. But, you do need to get back on the B12! I take it your anxiety didn't improve when you stopped it?
Do you think you're still hyper? What were your last labs like? That is the nature of Hashi's, you know. And it's perfectly normal to be more hypo after a hyper swing, than you were before it. If only doctors knew all that...
Going in for bloods in morn as per my "omg" post. U need to read it hun. Deffo an omg moment when he suggested in having the right bloods done including antibodies! Only been on my tweaked dose since 2 dec though! Do u have hashi's?
Wondering whether to have private bloods to check magnesium, selenium vit d levels. Am supplementing with nuts and seeds but nausea prevents me from eating too much at moment. Do have some probiotic drinks which i havent started yet. Could they help? Not sure what to eat with sensitive tummy, its a bit gurgly too
faith63 said "The tests for leaky gut involve a stool sample. It was icky! My son and i had it done, i think Flower did too. When you have autoimmune disease, you have leaky gut...period"
Clutter said the other things. Most people that have leaky gut, have no gut symptoms, just illnesses, rashes etc..
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