Thyroid and new treatments will they help me ?

I am new on here and have been looking into fibromyalgia and my thyroid problems. I believe I am still classed as having Graves' disease. I have a multitude of medical problems which started with hyperthyroidism when I was 29 yrs old. I suffer many different medical problems and have just read some stuff that say I may get well if I treat my thyroid differently to the thyroid replacement which is standard. I was treated with drugs when I was first diagnosed ( I was told by my specialist that I had been close to death. I had not been believed by my gps at the time.I was then told I had to have RIA and so did. I was well for a while but they said I had to have it again. I was given no explanations and told nothing. I had second dose. I have not had a days well health since.I take 100 micrograms of thyroxine daily. No one has ever said anything to me since then apart from when some gp reduced my thyroxine from 150 micros.My symptoms range from chronic pain fatigue, not able to walk far, unable to walk up stairs, overheating from chest to head, gullet problems spasms and swallowing problems, reflux disease, stomach and bowel probs, pain all over, inability to sleep, no concentration, memory poor and loss, unable to plan and finish something without severe problems. I keep gaining weight Unable to remember simple things ( where plates are ) unable to keep appointments. Stress confusion. I have bouts of sweating when trying to move around the house.Is this normal ? Is this within the realm of Hypo probs should I get help? . I sometimes think I am dying ! Could the Thyroid be the reason for my fibromyalgia ? Any answers to my complicated rambling would be gratefully received or if someone could point me in the right direction thanks

Last edited by

13 Replies

oldestnewest
  • Hi, I was hoping someone from admin would reply to you but here is my take on it. I think you probably are under medicated, due to the way thyroid health is checked. You have probably only ever had a TSH blood test, which does not establish true thyroid health. In other words, your blood test might look as though everything is fine but not whether you have enough Levothyroxine and whether it is being converted from T4 into T3, which is what your body actually needs to function correctly. Of course it is more complicated than that but basically if you ask your GP for a blood test to check Free T3 and Free T4 and also thyroid antibodies, you may begin to find out what is wrong. It is woeful that we are treated like this but the only solution is to ask questions and make a fuss. Do not be fobbed off with "your test is normal". Ask for a print out of all the results, showing the reference ranges and post them here, for us to see. It may be that you need to ask for a referral to an endo who is recommended by TUK. They have a list. You probably are also low in various vitamins and minerals, such as B12, Ferritin, Folate and Vit D. Doctors will deny all this but only after making a fuss would my GP check my iron stores and I was found to be anaemic. The body needs good amounts of these vits and minerals to process thyroid medication . Hope this has helped and that others will answer later today.

  • There really is no reason to leave things to the admins. :-)

    healthunlocked.com/thyroidu...

    I did respond to Lambchop-1 yesterday as she posted on an old thread. Anyway - your response looks good to me. I agree that under-medication appears likely. Getting those tests and results looks right at the top f the list of things to do.

    thyroiduk.org.uk/tuk/NHS_In...

    The other thing to do is read around the main Thyroid UK website:

    thyroiduk.org.uk/

    It always helps to get some more background information.

    Rod

  • I always feel pushy if I try to say anything before the knowledgeable admin team but felt I knew enough in this case to reply and the post seemed a bit desperate. Sorry if I offended!

  • No offence - whatsoever - taken!

    The admin team, for all their personal experiences, often know less than many others about specific areas. All helpful contributions are very welcome. :-)

    Rod

  • Thanks. You all do a brilliant job. I am in awe!

  • The above advice is what many of us would be saying. It is not good that you are suffering so much. Time to take control and take good care of yourself. Knowledge of the Thyroid is woeful amongst the Medical profession. Stick with this forum and you will learn loads.

    We will need to see recent blood test results and their ranges - and then we can possibly help. Please ask your surgery for them and post here.

    Have a look around the main Thyroid UK website - lots to read and learn.

    Do hope you soon feel stronger. Yes there is a link between fibromyalgia and thyroid. Low thyroid hormones can be the cause. I was diagnosed many years ago with FM and have slowly improved over the years as my thyroid treatment has improved and been tweaked with information from this site. Shaws - who posts here from Admin - has excellent links to Dr Lowe who was an excellent exponent of FM treatment. Have a read of her posts.....

  • Hi Marz Thanks for the information have made an appointment for tomorrow at Gp so hopefully can get somewhere although after reading some bits it's not looking good. If we were all misdiagnosed isn't there a case for negligence and surely that would be the way to make them change the way we are treated ? I will be reading on thanks so much and will get back with the response of my GP :-)

  • ..good luck !

  • Hi have been to docs and this is what he said in 2011 my results were 16.5 I asked him for t4. Free t3 and free t4 and thyroid antibodies Im afar aid I couldn't make much sense if it but he went on to say my t3 was 5.2 in October my tsh was 0.05 and in April gone was 1.1 he has said he will test again next week after giving me some penicillin. Do these figures make any sense ? Thanks

  • Sorry Lambchop - I know I am tired as I find your post difficult to follow. To make a considered reply we really need the ranges.....and full stops in the place where the sentence ends. Maybe you are tired too - I'm two hours ahead in Crete and just off to bed !

    Hope to be able to help more when I'm more awake in the morning. :-)

  • Hi Marz I'm sorry it does read like gobbledygook your right. As well I don't really understand it all. I'm such a dodo I don't have a clue. I scrawled it down at the docs as he said it and my brain just doesn't get it that quick.I think he said T4 was at 16.5 that's why they reduced my thyroxine. In October gone my T3 was 5.2 and then he said my tsh was 0.05 and then in April it had risen to 1.1 he is going to check them again. Is that any better or shall I ask for a printout ? I do hope you sleep well thanks carol :-)

  • ..it would be best if you ask for your blood results to be printed off and also with the ranges as they differ from lab to lab. I think he may have reduced your dose based on the TSH of 0.05 as he may have thought that was too low. Many people are happy at that level.

    Still no result for your anti-bodies ? - as suggested above. Then do not forget to achieve good levels of Iron Folates VitD B12 etc.

  • Thanks Marz will do that :-)

You may also like...