I was diagnosed with Fibro a couple of years ago but I have always felt this was just a label given to my condition as other things were apparently 'ruled out'. I have awful fatigue and muscle/ joint pain, any time I do manage some sport the lactic acid lasts for about a week. In the last couple of weeks I have been monitoring my resting heart rate which tends to be around 52 but sometimes as low as 47. I am overweight (and have been most of my life despite numerous diets which I stick to religiously) my hair is thinning and now my toenails are splitting horizontally. I have a GP appointment tomorrow but I am fairly sure this will just result in more blood tests (possibly including throid function) which don't tell me anything. Does anyone have any suggestions or advice on how I should tackle this with my GP? Are there different tests I should be asking for? I live in the U.K.
Any help much appreciated! Thank you!
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DebsH1970
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I am not as experienced as many on here nor am I medically trained however its likely your GP has only ever tested your TSH what you need doing is
TSH
T4
T3
TPO and TGAB antibodies
My understanding is even if GP requests this full thyroid test if the TSH comes back within range the other tests will not be done. Ive also read that secondary hypothyroidism can give normal blood readings as its the pituary gland that is not working I would recommend you do some reading around secondary hypothyroidism if all your results 'look' normal but ask for a print out of your results and post them on here and have your bloods drawn as early as possible in the morning fasting on water only.
I would ask for a full thyroid panel although it is unlikely they will test your T3.i never had it done on the NHS. Also ask for Vitamins D and B12, ferritin and folates, again I had to have my vitamin D tested privately.
I had an overactive Thyroid with antibodies (Graves Disease) but I also had dreadful muscle pains especially in my shoulders and neck, as well as be8ng generally creaky. Eventually I had problems with my hands and had to use things on plugs to be able to pull them out of their sockets etc. My amazing GP referred me to a fast track rheumatology clinic.
I had a three month course of steroids which took all of those pains away - I was like Wonder Woman - I was constantly aware that I wasn’t in pain, then, because the steroids worked, I was started on hydroxychloroquine and have been on that ever since - no more fibrositis/ muscle pains as well as being able to use my hands and fingers again. Still a bit creaky in the mornings but nothing like before but that horrid burning fibre pain has all gone.
So it could be that you have both a thyroid problem and a rheumy problem.
I was also prediabetic - I was on a study at around the same time as I saw the rheumatologist and started the steroids and discovered at my first annual checkup that the steroids tipped me into T2, diabetes. I was thrown off the peprediabetes study and my local surgery gave me three months to get it under control using diet and exercise. I went online and discovered and bought an amazing book by Dr David Cavan about reversing T2 diabetes and then I bought a blood sugar machine and tested before and two hours after every meal, recorded everything I ate like it said in the book. I eliminated absolutely everything that elevated my blood sugar mostly grain based foods and got my HbA1c back to normal and also lost a load of weight without ever counting a single calorie. I just did exactly what it said to do in the book. Like you in the past I had tried and stuck with every diet known to man. I’m not medically qualified but I expect your problems are not just down to one thing.
Thank you so much for taking the time to respond. It's all very useful and I will certainly ask for the relevant tests tomorrow and see where we go from there. You may well be right about tere being mreo than one thing underlying it all. I just never felt in my heart-of-hearts that fibro was a correct diagnosis.
The above link takes you to the main website of Thyroid UK and linked to the companies carrying out Home Testing - so well used by members as rarely are the correct tests done by the NHS.
TSH - FT4 - FT3 - Anti - TPO - Anti-Tg and in addition B12 - Folate - Ferritin - VitD.
When you have your results post them in a new thread and members will help. You can by all means ask your GP but from reading loads here for years it is routine for labs to just test the TSH and occasionally the FT4. Not the FULL story - you need much more information to help you to become well.
Lots of thyroid information on the link above. When you see your GP request to have copies of all your test results with ranges - as they are legally yours ! You can then monitor your progress and check what has been missed - yes it does happen.
Brilliant, thank you. I didn't realise the tests could be done elsewhere. Fortunately my GP is quite good at sharing information and has gone digital so I can access all the data myself once available. I'm very grateful for your help.
You need a Full Thyroid Function Test. The GP or lab may not do all of them but there are two private labs which can do those that the doctor hasn't.
TSH, T4, T3, Free T3, Free T4 and thyroid antibodies.
The GP should test B12, Vit D, iron, ferritin and folate. Everything has to be optimum.
When you have blood test for thyroid hormones, it has to be at the very earliest, fasting (you can drink water) and if you take thyroid hormones you've to allow a gap of 24 hours between last dose and the test and take afterwards.
Get a print-out of your results with the ranges and post if you have a query.
The following is from an doctor/scientist who was an adviser to Thyroiduk.org.uk before his untimely death. He also ran the Fibromyalgie Research Foundation. He states that people who have Fibro actually have a Resistance to Thyroid Hormone Resistance and that only T3 alone can relieve the miserable symptoms.
Thank you. It would be amazing to think there is some relief from these awful symptoms.
DebsH1970 If you were tested for a thyroid disorder previously, it may have been that your thyroid was struggling valiantly to keep levels up at that time, and so a problem may not have shown up in your blood results, or at least, insufficient of a problem to trigger your Dr's interest - especially if you have autoimmune thyroiditis aka Hashimoto's, and you weren't tested for antibodies. Things may have now moved on and your thyroid hormone levels may now be such that your Dr can't ignore what they are signifying; but in any case, as your symptoms have persisted it is important that as a minimum you have antibodies, TSH, FT4 and FT3 tested, so far as your thyroid is concerned - although it's likely you may not get a FT3 test, and possibly not even a FT4 if your TSH is within range, even if requested by your Dr as labs tend to follow a path of their own when it comes to the scope and breadth of thyroid testing. Others will be along to advise in more detail, the full range of tests you should ask for, but it may be that you need to bite the bullet and obtain a comprehensive set of tests privately. Meanwhile if you have your results of all the tests that were carried out when you received your Fibro diagnosis (you are legally entitled to them) you could post them here for members to comment on what may have been going on back then, but for preference, post your new results when you have them.
Thank you. You've all been incredibly kind and at least I know what to ask for tomorrow and if I can't have all the tests I know I can access them elsewhere too. What an amazing group. I'm so very grateful for all the responses.
Thank you so much. I feel well-prepared for my trip to the docs tomorrow. Whatever is going in with me is definitely worsening and one way or another I'd like to get it under control if possible.
Thank you very much. I have some serious reading to do! I must admit I was naive about the different kinds of hypo too so will make sure I know a bit more by tomorrow!
DebsH1970, You've had good advice on what tests to ask for. If you don't manage to get them all, the ThyroidUK website explains how to mail order a pinprick test you can do at home.
Some of the doctors that are most highly regarded on this forum have believed that fibromyalgia can be treated with thyroid hormone, so there is definitely a chance yours could be, too
Most important to make a new thread when you've got all these results and you will get good advice from knowledgeable members.
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