A story of healing.... Hashimoto's now under co... - Thyroid UK

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A story of healing.... Hashimoto's now under control!

ladyv1975 profile image
14 Replies

Hi everyone

I have been a 'silent' member for some time now, and have found the information on this site to be invaluable in my journey to returning to something resembling a human being rather than a zombie! I just wanted to share a little of what I have gone through with the thought that my story may give others hope while they are working towards returning to human being-ness once again.

I was admitted to hospital in December 2012 on three occasions because of horrendous hives and angioedema (to the point where my airway was being restricted). The hives and swelling were brought under control with a cocktail of steroids and antihistamines. Did I feel better - absolutely not! Did anyone question my 3 stone weight gain and feeling beyond exhausted? Absolutely not! I did lots of research myself and concluded there may be a thyroid connection to the hives and the weight gain and the tiredness. My GP told me this was silly and unlikely but I begged to have my thyroid tested. Lo and behold - it was underactive. I don't have the full panel from this point in time but I do remember my TSH was 16 and my TPO level was >2000.

I have battled for 5 years with GPs who do not understand but now, I have a decent GP, pay for my own private blood tests to keep an eye on things, and I am in the best shape I have been for a long time and I've lost that three stone with a little bit more thrown in for good measure! I take 150mcg thyroxine, 3mg LDN (to settle my immune system and stop it from wrecking my body) and supplement with 200ug Selenium, 1000ug Vitamin B12 and 2000IU Vitamin D. My latest results are TSH 0.20 (range 0.27-4.2), Free T4 22.3 (12-22), Free T3 5 (3.1-6.8). TPO is down to 311.0 (0-34) which is dramatically improved from over >2000! And yes, my GP is fine with them being a little out of range as she understands TSH suppression and high T4 work well for Hashimoto's patients. I also used to run 5k several times a week and I'm now back training to do the same.

Please PLEASE listen to your own body and do your own research and be persistent - if your doctor does not listen then change and get one who does.

Finally - thanks to all of you who have posted in the past and have helped me learn all that has given me my health and my life back. I wish you all health and healing for many years to come... thank you!

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14 Replies
lady_eve profile image
lady_eve

As one 'lady' to another, thanks so much for sharing this story with a side-order of hope.

I am filled with awe and wonder that you have managed to lose so much weight and regain enough energy to 5k runs - both states I can only dream about. I'm so glad you've found a receptive GP after 5 years, too; I'm still struggling with mine after 13!

Like you, I am taking 150 mcg levothyroxine, with similar supplements of B12 and D3. Coincidentally I've been wondering about selenium over the last few weeks, but felt I needed to find out more about it. Is there a test for this, or do you just go for it? Also, I'm not familiar with LDN - can you elucidate, please?

ladyv1975 profile image
ladyv1975 in reply to lady_eve

hello fellow Lady!

I have been following a diet plan since May which has led to me losing all the weight - only because my thyroid has been working properly since then. I'm not sure if I can mention the name of it on here - is that advertising? - but the initials are SW and it has worked for me!

I decided to try selenium after what I had read here, apparently it helps your body use the thryoxine and has also been shown to help reduce those nasty TPO antibodies. I don't know of any test - I just picked the dose based on what I had read here and in other places.

LDN - low dose naltrexone - is not licensed on the NHS for treatment of autoimmune conditions. It is however licenced for treatment of opiate addictions - this makes me mad but let's not go there! I get it on private prescription and am supervised by my GP. In a low dose the drug is shown to calm an overenthusiastic immune system. Has it worked? Well my Hashimoto's is no worse, better in fact, and so far I have no other AI diseases. There is a lot more to know about this, there is a trust campaigning to have it made widely available. Their website is ldnresearchtrust.org and there is a load of info on there.

lady_eve profile image
lady_eve in reply to ladyv1975

I'm quite new to the forum and not very active. I'll do a search for selenium and see what comes up! Thanks for the info about LDN. It's not something I've come across before.

Maybe you could PM me the name of the diet plan - I'm out of guesses!

Best wishes.

greygoose profile image
greygoose in reply to lady_eve

Slimming World. Which is not a very healthy diet, because it advocates low/no-fat, which isn't healthy. Plus, I suspect, in some of their own brand food stuffs, there is soy - but I don't know for sure.

lady_eve profile image
lady_eve in reply to greygoose

That's helpful, thanks. Like you, I'd definitely steer clear, personally, of a low-fat diet. And I'm not keen on soy for obvious reasons! It just goes to prove that there is no 'one size fits all' solution in hypo, doesn't it?

greygoose profile image
greygoose in reply to lady_eve

I don't think it's just a matter of choice.

lady_eve profile image
lady_eve in reply to greygoose

Sorry, are you referring to the question of soy? I feel as though I've missed something (which is entirely possible, brain fog and all).

greygoose profile image
greygoose in reply to lady_eve

Well, if I understood correctly, you said that one-size doesn't fit all when it comes to thyroid. Which is true. That's true for everyone, not just hypos.

But, there are certain things that are absolute, I believe. One of them is that the body needs fat, so a low/no fat is bad for us. The other is that unfermented soy is bad for everybody. So, it's not a question of choosing whether or not to go on a low/no-fat diet or eat soy. If you do those things, you will eventually pay the price.

So, Slimming World - even though some people lose a lot of weight on it - is not a good way to lose weight.

Besides, most people that lose weight on Slimming World put it back on again at some point, and start all over again. That's how they make their money : return customers.

lady_eve profile image
lady_eve in reply to greygoose

Because I am hypo, my interest will always lean that way (particularly in a hypo thread), but I am in no way detracting from the significance of other thyroid conditions. I'm sorry if it came across that way.

I happen to agree with your observations on essential fats and harmful soy. But the idea of absolutes makes me uneasy. People make choices, every day, including the initiator of this thread, whose choice has worked for her. Isn't that her right?

Absolute belief is a tricky thing. Lots of doctors, for example, believe absolutely that TSH is the only valid measure of thyroid function. If we question that, we must be prepared to have our own absolute beliefs questioned, too.

I know I've now opened the door to challenges over life and death, right and wrong, and our responsibility for our own health, but that's about as philosophical as I can manage to get on a wet Wednesday.

greygoose profile image
greygoose in reply to lady_eve

I'm not being philosophical. You haven't opened any doors, and I'm not talking about any thyroid condition in particular - although soy is worse for hypos than for others.

Fat is essential for a healthy body, and soy is not food. That's all.

lucylocks profile image
lucylocks

Thank you for sharing your positive story.

You have had a awful time before you were diagnosed.

I have been hypo. for just over six years now, but last May started with hives and eczema.

I had my blood tested and one of my antibodies had risen to just under top of the range. As it is still in range my Doctor says I do not have hashi's, but some members say because it is near top of range I could have it.

I have been taking 2 grains of NDT (W.P. Thyroid) and although my T3 is at a good level at 5.4 my T4 is under bottom of the range. This has made me wonder if the low T4 has anything to do with the hives/eczema, so was interesting in your Doctor saying, a suppressed TSH and high T4 work well for hashi's patients.

I am waiting to see an Immunologist and I do feel the hives/eczema could be thyroid or immune system related.

Thank you also for providing the link for LND.

I will do some research into it.

I wish you continued good health.

liz1952 profile image
liz1952

Fantastic news....so glad for you. Take your health back in to your own hands seems to be the leading Thyroid message....you are living proof x

Marz profile image
Marz

Great story - and I too found health after learning from others who know more than me. Hence I keep following this forum and after 6 years as I am still learning. New things crop up all the time.

You must be so relieved to notice the improvement - but do keep monitoring and reading as things can and do change. Your training sounds impressive - I feel well but can't run to the front gate !

Irishbutterfly1 profile image
Irishbutterfly1

Hello all. I want to comment on the SW diet. They do promote low fat and their own brands. What does work for them and other "diet" organisations is the group therapy aspect of being with others who are struggling with weight loss and getting support for making the "right choices". I lost a lot of weight with them but only down to my own fault I have put some back on as I have been eating the wrong food. You can still choose to eat fat but I strongly believe that m

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