Right, I have an appointment Monday to see the doctor about my on going symptoms, this has been going on since my 20's (I am now 42) but the last five years things seem to have become rather more aggressive, especially the last two years.
I've just been through a rather aggressive flare of lichen planus, I have it everywhere you can get it and it's not as bad some photos I've seen but it's getting much worse every time and it's spreading further. I didn't actually realise how crap I felt as I was working 16 hour days 7 days a week for around 4 months and was on auto pilot so just put feeling totally annihilated down to work. (My job is physical and I'm self employed.)
Ive been tested for thyroid issues, but the doctors said I was in range so to forget that idea.
My results came back with tsh 0.91(range 0.38-4.70)My lymphocytes were under as were my heamoglobin and heamotcrit, and platelets were off.
I've been doing a lot of reading up the last six months and as I have lichen planus and its firmly rooted to me, then there's pretty high odds I could have hashimotos.
I worked really hard six years ago and lost four stone, I've put almost half of that back on the last 14 months.
I used to take my dogs out every day, I can't now, it wipes me out. I'm still very active but if I have a day off I gain weight instantly.
I have joint pain, swelling, water rentention, slow heart rate of between 45-56, always cold, back pain, stomach cramps, headaches, muscle cramps, weakness in the limbs, vision is off, hair loss, dry skin, tiredness, blood sugar issues, extremely reactive to adrenaline. (Adrenals and thyroid work together, if the thyroid isn't happy then the adrenals suffer) I have little tolerance for stress and I seem to be very angry a lot of the time, the slightest thing sends me into an emotional meltdown.
So, my question is, what should I be asking for test wise?
He won't test for t3 or t4 as he thinks my tsh is fine.
I think I need antibodies testing, but do I need to ask for specific ones? Does it make a difference if I'm not feeling like a bag of crap when I have the tests done? I always seem to feel OK by the time my appointment comes through and then nothing abnormal ever shows.
Sorry for the epic post but I just seem to be going around in circles with this. If it's not my thyroid then what is it? I don't expect a miracle drug to fix it, I have adjusted my diet, I've cut caffeine (almost) processed foods and sugars and very little carbs.
I can lose weight but only if I eat around 500/600 calories a day and that's low sugar low fat low carb, not great when you do a physical job.
Thanks in advance for any advice. 😊
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Lorriloo
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Hi Lorriloo , it does sound like you have a lot of the symptoms I had last year, I have Hashimotos but have managed to get a lot of my symptoms under control. The things that stand out to me are the fact that your symptoms mysteriously disappear, the thing with Hashimotos is that we swing between Hypo and Hyper so your doc might have caught you on an up swing - your TSH is altered due to this also so you could actually have a totally different number this week.
The other thing I noticed is that it sounds like you have Andrenal Fatigue and Blood Sugar Problems, I reckon your adrenals have just crashed following your period of over exertion.
You need to ask your Doctor test your TPO AB & TG AB. Another thing you could do is take your basal body temperature every morning and take them to your doctor.
If your doctor refuses to test you for what you want then unfortunately you are going to have to get tested privately.
Make sure you have thyroid hormones, vitamin B12, vitamin D, folate and ferritin tested. A non-optimal level in vitamin B12, vitamin D, folate and/or ferritin will contribute to your symptoms.
If you do have a thyroid problem - and let's assume you do for the sake of argument -- the last thing you want to do is go on a low calorie diet. That has an adverse effect on the gland and on conversion, and will make you more hypo, and put on more weight. Do not cut our fat. Your body needs fat, and eating it doesn't make you fat. What's more, low carb is bad for thyroid, too. And please don't cut out the salt because adrenals need salt, and your thyroid needs the adrenals.
Doctors know nothing about the thyroid. They are too dumb to realise that just because the TSH - a pituitary hormone - is OK, it doesn't mean that the actual thyroid hormones are also OK. But, even if you got your doctor to agree to test them, there's no guarantee that the labs will agree! They have the power to veto your doctor's request for tests - as strange as that may seem! So, as the others have said, you need to get private testing.
Another reason for private testing it that the NHS will only test for one Hashi's antibody, and there are two. Either of them could be high, and mean you have Hashi's, or both of them. So, you need the TPOab and TgAB. And, as bluebug said, you need your nutrients tested. Some of your symptoms sound like they could be due to nutritional deficiencies, and hypos - and people who diet - often have nutritional deficiencies. So, test the basics, vit D, vit B12, folate and ferritin, and you can work from there. Put all the results in a new post, when you get them - don't forget the ranges! - and members will be able to advise.
Thanks everyone 😊 I was considering private testing but thought I'd give the dr one last go.
As far as dieting, I eat a balanced diet, I'm mindful to include powerful greens with iron etc I just avoid processed rubbish with refined sugars.
It's a struggle as I'm trying not to gain anymore weight but just don't seem to get the energy I need from the food I can eat.
Some days I really crave carbs but I gain weight instantly from them.
I was privately tested for allergies/intolerances years ago and was told milk affects my ability to absorb nutrients and minerals well so I gave it up but I never noticed a difference.
When I said I feel OK by the time I go for testing I meant I don't feel like I want to hide under the duvet, I'm never ok, I haven't been in years, I have good days and bad days, there's not really a pattern to it, but when there's lots of flu and germs about then it all kicks off again, my immune system goes into spaz mode.
I know I have a partner in crime to my lichen planus I just haven't discovered what it is yet!
Although many autoimmune conditions are due to leaky gut so healing the gut and building up your immune system would be in order. But I really don't know anything about this disorder but I hope you figure it out.
I'm not sure building up my immune system would be a soloution, as lichen planus is a result of my immune system attacking my healthy cells in error as with all auto immune diseases. I have been reading a little about leaky gut, thanks for jogging my memory on that one. 😊
I think that theory is wrong. I know it's been dispelled by some although I have not read the science behind it lately. I'll look. How about your essential fatty acids. I know they have a lot to do with your skin and people who have a problem with sebaceous cysts are helped by increasing their intake. Probiotics and prebiotics are becoming more important. Maybe checking those out as well. Iherb.com has some information for researching supplements.
Probiotics and probiotics are a good idea, I forget about things like that, which is daft as my dog has an internal and external yeast problem and I've managed to get that sorted now. 😊
HaHa, now you can get better together. I don't know if they would be similar biotics but we have to restore the gut flora somehow. That's where the immune cells originate for the most part so get good ones.
Have you had a full work up by s rheumatologist? With your lichen planus you indeed have a lot of inflammation. Question is...why?
My test numbers never indicated that I was hypo yet my symptoms clearly were. Fortunately I found a private endo (I'm in the US) who gave me a hypo dx and started me on meds.
About the same time, I was sent to a rheumatologist who discovered that I have lupus (SLE). I started on hydroxychloroquine immediately. A few months later, tests also showed that I have Sjogrens.
Just thinking you could have a lot more going on. I feel for you.
I am just recovering from Hashimoto's, I also have Hypothyroidism and before that I was borderline for about 6 years before, finally getting put onto Thyroxin. I also have Litchin Planus. Your symptoms are very similar to the ones I have experienced. If you were already Hypothyroid and then go into Hashimoto's as I did then the blood tests can actually register as normal for a start as you are not on any medication. it is a weird thing. Because I was already Hypothyroid when I had Hashimoto's I couldn't take any medication as it made it worse but despite that the blood tests came through as normal for a start, not later. They knew it wasn't right as I wasn't taking any medication. I do think you are right here with what you are thinking. Also with Litchin Planus I found that went berserk when I had Hashimoto's. I am still having what is referred to as 'splutters' which means it comes back and goes again until it burns out. Each time I have a splutter the Litchin Planus drives me mad. I think the other replies are right saying to go private, either a Private Endocrinologist or a good Private Doctor. It's finding one that is good that's the problem, just because a Doctor is private doesn't mean they are good or understand Thyroid problems. I would look around for one that is specializes in Thyroid if you can.
Thanks Rosierebel, I do have inflammation, I've been managing that for a long time, I find if I cut out sugars it makes a huge difference to the aches, I try to stick to aspirin and paracetamol instead of anti inflammatories as they aggravate auto immune issues too but sometimes have to concede when the stomach pain is too bad. I hate taking anything so its rare I give in. I've cut out nightshade foods as well, but didn't feel any benefit. I know what you mean by sputters, I'm still finding new blisters daily, the ones in my hair are the itchiness I think. It's looking like private is a possible answer, in in East Sussex, does anyone know of a good auto immune/thyroid doctor?
If nothing else I've learnt a hell of a lot about how my body works, exactly what is in foods, what I should avoid and how a lot of auto immune diseases are linked. It's interesting stuff 😊
Hi there. Don't wait go straight onto Blue Horizon and order their thyroid plus 10,it checks antibodies , b12 and vitamin d,yes is is expensive around 200 pounds but delaying investigating your issues can only do harm.To the doctors you are just another person to get through in their day while decisions they make impact massively on our lives.I was in a similar situation,ordered my own tests and found out I have b12 deficiency ,Vitamin D defiency plus an off thyroid reading .I am now self treating as my doctor was annoyed with private testing so she only agreed to minimum b12 injections.You are your only advocate act now.Linda ☺
Well I've been, not sure if it was a waste of time or not. He's referring me to a dermatologist to have my lichen planus looked at again as its escalated a fair bit in the last year. His thinking was that they may test for things he wouldn't think of and it may uncover an underlying cause. He wasn't interested in looking at my list that he told me to make when I saw him last year, and was rather non commitall when I asked for a glucose tolerance test. After doing some homework over the weekend I think my blood sugar issues could be reactive hypoglycaemia. He is going to see about a test but I've asked for things before and been told later in the day that they wouldn't in the end.
I looked at the blue horizon testing last night, I'm not sure which test to go for, the plus ten or plus twelve, any advice?
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