I notice that there have been a few blogs on this previously but these were quite a while ago so I thought I would bring this to the forefront of everyone's mind...
There is a link between having Coeliac's and autoimmune thyroid disease. If you have one, you are much more likely to have the other. The gluten protein is very similar to the protein of the thyroid gland and the immune system can get confused and start attacking the thyroid gland, thinking that it's gluten. So if you have gone gluten free and are still feeling rubbish, exhausted etc then do check this out, EVEN IF THE DOC SAYS YOUR THYROID BLOOD RESULTS ARE NORMAL!!! You may still be hypothyroid.
If you are diagnosed with ME, CFS or fibromyalgia then this is another avenue for you to explore, as quite often these conditions are undiagnosed hypothyroidism.
The Thyroid UK Health Unlocked forum is a good place to start looking for info and help:
If you think you may have a thyroid problem start taking your morning basal temperature and get your GP to check your antibodies: TPO Ab and Tg Ab is what you need to ask for. The forum and website provides much more info on this and other blood tests which need to be done.
I mention this in the hope that it may provide some answers to someone out there
Thanks DiamondFire. We have mentioned this link before and we hope your post & link to the other group on HU for Thyroid UK helps to remind everyone here not to suffer in silence and to quiz their Dr about other auto-immunes (AIs) like thyroid disease.
I think they are all connected, but the question remains does one ever lead to improvement in another? So far, my experience is no. My thyroid still requires large doses of medication, my Fibromyalgia remains painful and incapacitating, my arthritis is crippling, my GERD persists in spite of 2 medications and I still have the pain and discomfort of IBS once in a while. Has my general health improved...no ..if anything it's getting worse. It's like the dog barking to go out... I'm not sure who's trained...me or the dog? Do I know how to get around my symptoms or do they improve only to mysteriously get worse again in spite of my very best efforts to control everything with diet and suppliments?
V true Liana. Sadly with auto-immune diseases we'll all have ups and downs - keep working at it. Glad to see we're not the only coeliacs with ongoing problems ; )
The chances are that if you are taking medication for your thyroid (I presume the standard T4/thyroxine which GPs dish out) then you could well be undermedicated. Post your test results on the Thyroid UK forum and someone will let you know what they think. Even if your results look good, there are other treatment options for hypothyroidism which GPs do not make their patients aware of - T3, NDT, ERFA, T4/T3. You may need to try a different medication. xx
Additionally, fibromyalgia, arthritis, GERD and IBS can all be symptoms of an underactive thyroid, along with numerous others which many docs are unaware of. If the symptoms remain then they need treating, either with more medication, or with a different one.xx
Hi Liana, Not sure if this will help much but have you tried having a course of aloe vera juice? Aloe vera has the capacity to heal your body from the inside. I have tried it and from time to time drink it. I also have the tablet version of the plant and find that quite useful too. There are many brilliant websites full of information but I've attached a couple for a quick read. You can find many more if you'd like to cross-reference: gardensablaze.com/HerbAloeM...
The other herb that is useful to take especially approaching and during Winter time and stressful times in life is Astragalus. This is a very ancient herb that has, I believe finally been recognised by the medical profession. It helps to support your immune system gently strengthening it to help your body fight full-on attacks. Again there have been many websites and news items written about it's amazing abilities - have attached as before but suggest you might like to cross-reference to obtain as much information as possible. This is another herb I like to have on hand .. (I'm also a fan of elderberries as these are the natural British immune boosters and healers .. so I gather these when they are in season and gently stew them up with a little sugar making them into compote which I use during the rest of the year. You can purchas capsules from health shops but they are so abundant when in season and even the flowers have healing properties if you don't fancy collecting the berries!)
Worth getting your vitamin D levels checked. I discovered the hospital coeliac clinic had totally missed mine were severely deficient at diagnosis (15 vs 50/75 as they should be). Low vitamin D causes fatigue, aches, pains, spasms and has been linked to MS & Thyroid problems. So get your Dr on the case. They'll say everyone is low which is true as sunshine is the main source (eating lots of oily fish & eggs will never give you enough) but as coeliacs have damaged stomachs at least initially we don't process it correctly until we heal. And we all know that can take from 1 yr to 7 yrs depending on how long we were symptomatic for and damaged before diagnosis.
And yes after my yearly vitamin D injection I feel more like a 50 yr old (even though I'm way younger!) vs the 90 yr old I often feel like ; )
Thank you Lynxcat. I have heard of aloe as an internal medicine but only ever used it externally. That is a certainly an avenue to pursue. Here in Canada, my husband and I take a medication called Cold FX which is high grade ginseng and clinically proven to boost the autoimmune system. I also take theraputic levels of Vitamin C.
FionaGFG, in addition, because of our climate I am tested for Vitamin D and do take a suppliment twice daily.
The exciting thing for me right now is allergy testing. There is a new blood test here (homeopathic) that will test for allergies of 250 foods and food additives even if you not currently eating them. I understand it's available in the UK as well. I get the results next Tuesday. They also provide 3 lists of foods: avoid, in moderation, daily use. They also suggest what vitamins you need to take as suppliments in addition to dietary suggestions and recipes. My private health insurance covers 80% of the cost. I'm hoping this will bring some new insights and relief from symptoms.
Thank you for the time frame FionaGFG. I am almost 5 years into the gluten free life style. Perhaps the next couple of years will bring improved health.
Good luck with the tests. I always worn people about these as some are more quackery than science but it sounds as if yours is a kosher one. We have a good site here in the UK that can help provide other coeliacs looking for answers with help: allergyuk.org/ is this hc-sc.gc.ca/fn-an/securit/a... the Canada equivalent?
It is a pain as we seem to have to be detectives and take charge of our own health as Drs often believe going GF cures all our ills. From lectures I've attended/ reading & my own personal experience I've learnt:
- things often get worse before they get better
- it can take ages for our gut to heal and then longer to operate at the right levels again
- we need to watch our energy levels - sometimes we'll be tired and fatigued other times full of energy and running at 110% - we do have an auto-immune disease and it's easy to forget that
- food can become a positive past time
- years of damage & low vitamins and mineral due to CD damage won't be cured overnight by going GF - boosting our sleep, vitamins, minerals and healthy food can all help - being patient is really a virtue though
- everyone is different and take each day as it comes
- doing something - to kick your body back into being balanced is the best medicine - small steps will make a big difference
- sharing ups and downs on line does help - no-one is alone
Do keep us posted. It'd be good to hear how you've managed to move things on.
Homeopathic medicine (I can't even begin to imagine what homeopathic 'testing' involves) is complete and utter quackery and no one on this site should be conned into buying this stuff. It's all crap. Companies like these are taking advantage of people looking for an answer and duping them out of money that they can often can't afford to spare. It's something that I feel very strongly about and the people that flog this rubbish really piss me off.
Allergy testing used in a proper clinical setting is inaccurate enough (as every immunologist knows). Even over-the-counter allergy kits that proclaim to work in a conventional manner are at best worthless and at worst dangerous.
Everyone, do make sure you post any thyroid blood test results on the Thyroid UK forum and have someone interpret them for you. The people on this site know the ideal figures WITHIN the reference ranges to be aiming for. They are lovely and are so dedicated to trying to get people better.
Other things which would be good to have tested, amongst others, are B12, Vit D, folate, ferritin. Low levels of these can cause hypothyroid-type symptoms. Again, the reference ranges for these tests are very wide so even if you fall within the lab's 'normal' range you may still be deficient. More info about this on Thyroid UK - others will know the best part of the range to be aiming for.
Another thing to note is that if you have only had your TSH tested and it came back low within range, this does not mean that you are not hypothyroid. If you do not have your FT4 and FT3 tested it is very hard to see a full picture of what is going on inside your body. TSH on its own does not prove anything.
So I guess my main point is... GET YOUR LAB RESULTS AND POST THEM ON THE FORUM!!!
These are your legal right and your surgery should have no problem giving them to you. If they do - Freedom of Information Act - they can't argue with that. They are YOUR results.
Your post made me think about asking my GP's surgery for the details of my last thyroid test which I had in March, I had terrible muscle spasms in both legs at the same time, I had been taking Dapsone and the doctor said that the medication wasnt to blame and said she would test for thyroid, the tests came back as normal. The test I had was apparently a serum TSH level ( range between 0.5 and 4.7) with my test coming back as 2.3. Should I be asking for a different test ? thanks for any help you can provide
Sorry for taking so long to reply, I seem to have missed the email. I'm glad you went to pick up your thyroid results. The NHS will only test for your TSH, and if your result comes back within range (like yours did), they will not test for your T4. They only test for it if TSH is out of range to save money. Unfortunately, TSH does not tell you whether you have a thyroid problem or not, although this is what doctors rely on for diagnosis, which means that many many people get missed. You need to know your actual levels of thyroid hormones (T4 and T3) to get a clear picture, as these are the hormones which actually have an effect on your body. In the big picture, TSH has no effect on the rest of your body.
If you can get your GP to test for your T4 as well as TSH, that would be great. The T3 test is apparently so expensive that labs refuse to do it, so you may find it very difficult to get that test done. However I know of people who had 'normal' TSH and 'normal' T4 but low T3, and of course it therefore takes years to get to the bottom of what the problem is because nobody does the right tests.
Check out all the symptoms and present all the ones you have to your GP. Don't dismiss the so callled trivial ones like dry skin/hair as it all builds up the bigger picture. Check out the full list of symptoms on the thyroid UK website.
Also, the time of day you had your blood test done is important. TSH is highest in the morning and drops as the day goes on, so ideally you want to have your blood taken as soon as the surgery opens.
If you haven't already, I would go onto the ThyroidUK healthunlocked forum, just like this one, and post and read what everyone has to say. There is a lot of information there.
I hope this is helpful to you and I haven't overwhelmed you with too much information. Take care and I hope you get it all sorted out soon.xx
I will look into the different tests as I am due to have some blood taken tommorow for vitamin defiencies and will need to go to the doctor for the results. Our doctors are fairly good but I am sure like all of the health service they have to be careful with their money. Because you have explained it so well I might copy the information you have given and take that with me.
I have looked at the symptoms for thyroid problems and do have some of them but some are the same as with CD, the one I am getting a lot lately is painful feet (under the arches) and I can see that others have this, unfortunately I didnt mention it to the doctor last time I went.
Also my hands and wrists are aching as i write this and I believe carpel tunnel is another symptom. My nose and hands are very cold but only sometimes, not all of the time.
What I think you have to be mindful of when looking at symptoms is not everyone has the same ones as you do, I only found out i had CD and DH when going to an immunolgist who tests everyone they see for CD, if I hadnt I dont think I would have found out, as although i do have symptoms they arent typical and to be honest I tended to put up with them.
Thanks again for taking the time to explain the tests for me it is appreciated
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