As most of you on here will know , have been suffering with a lot of symptoms for some time now , i.e , dry sore bloodshot eyes , hair thinning and breaking off , lumps swelling on left side of neck , swelling in hands knees and feet which on most occasions very sore , voice has turned very raspy, brain fog , and fatigue , most nights very little if any sleep . Now , i had very similar symptoms around 11yrs ago , and was told at that point by a consultant that I had graves and an auto immune disease and that these could be causing all the problems , eventually after playing about with my thyroxine the symptoms seemed to subside, until recently , I never understood what was going on with my thyroid etc as no one ever took the time to explain anything to me , was just left to get on with the treatment , and being nieve myself, I didn't even question it .
I am at present waiting to see an endo , but am just back from seeing a rheumatologist, he said i possibly have a form of arthritis ( which I cannot remember the name of and he forgot to write it down for me ) and has prescribed me a coarse of hydroxychloroquine, after looking up on this drug , apart from helping with RA and Lupus , it has also stated that it is used in the treatment of some autoimmune diseases, i am very unsure as to what to do , as he was very reluctant to even talk about my thyroid problems , do I take the medication ?? Or , do I hold off until I have seen the endo ?? Has anyone heard of this treatment ?? And could someone please help and advise me as to what I should do now . I am so confused right now , am unable to make any sense of what he told me . Some help and advice please someone , sorry it's long winded but there's a lot more , just dont know how to explain it all as I've been left in the dark so long by docs I believed I could trust . If i take sometime to get back to you all , I can only apologise for that , but i have to wait for my partner to be here to write for me , because my eyes are so sore looking at the screen constantly
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Sweetpea1157
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I don't see how you could possibly have Grave's if you were so hypo you were taking levo. That doesn't make any sense. But, that's consultants for you!
First thing you have to do is get hold of your blood test results - preferably your medical records - so that we can see what exactly is going on. If you are in the UK, it is your legal right to have these. Just going by symptoms can be confusing, but it sounds like you're under-medicated. But, you won't know unless you see the blood test results/have the right tests done. If you don't understand them, that's ok, we do! So, just post them on here, when you get them, with the ranges, and let's have a look.
OK, but it would be better to put the ranges with the actual result. Saves a lot of scrolling up and down.
Well, looks like you have a conversion problem. Although, to be honest, you don't have much T4 to convert. The FT4 isn't even mid-range. Should be at least over mid-range. You need an increase in levo.
Your vit D is too low for a hypo. Your B12 is much too low. As is your ferritin. If they were supplemented you might find you convert better. But, you still need an increase in dose.
Do you have a range for the antibodies? Because if you were told you had Grave's at one point - although I don't think you do - it could be that you were having a Hashi's 'hyper' swing.
Sorry greygoose , i am totally confused with the whole thing , got docs telling me one thing , but not explaining it , then have people here asking if I am sure about graves and auto immune disease, i feel totally stupid as i can only relay what docs have told me which is virtually nothing , reading the forum here has helped no end and I am trying to learn more as each day goes by .
I am looking into purchasing some books to try to help me understand a lot more ( all be it a bit late in the day ) , but am still totally confused with the whole thing .
I still want to learn more , and want to start feeling a lot better , than I do at moment .
Coming on here has helped me no bounds , just finding it very hard to find a way forward
You only have Grave's if you have Grave's antibodies: TRAB or TSI. If that specialist didn't test you for Grave's, then he had no business telling you you had Grave's! That is irresponsible.
If you have Hashi's - diagnosed by testing TPO antibodies AND Tg antibodies - then you are basically hypo. But, you can have 'hyper' swings, as the thyroid dies off and dumps stocks of hormone into the blood. Which is not the same thing as having an over-active thyroid with Grave's. But, the trouble with Hashi's antibodies is that they fluctuate. So, they won't be high all the time, and you can't rule it out with just one negative blood test.
Unfortunately, doctors often don't know the difference between Hashi's and Grave's. They don't do in-depth training in thyroid in med school - not even endos - so their knowledge of hypo is sketchy at best. And, they often tell you a lot of things that aren't true, or they don't tell you anything at all.
Their lack of training often makes it confusing for the patient. But, on here, you have thousands of people who have lived with the disease for a total of millions of years. And, what's more, have studied the thyroid more closely than any doctor. We have, between us, dug out the research that doctors know nothing about. Which means that our combined wisdom is more to be trusted than any doctor that spend a maximum of one single afternoon looking at the whole endocrine system - which is vast. So, his knowledge of thyroid, in particular, is going to be very limited. Here, there will always be someone who answers your questions, because they know what they're talking about. I hope that helps reassure you.
Thanks greygoose , believe me when I say I am listening more to the people here than the stupid docs , what can I do to rectify the question about graves / hashimotos , i understand that I need certain blood tests done , but how do I go about getting them ?? Is there a DIY blood test I can do for this ?? Or do I ask the endo for those specific tests ?? ☺
I don't know what to do to help myself , am taking on all advice I've been given , I've started taking the K2 as you suggested , been about 2 weeks since started taking them .
Have not started B12 , as not sure Wether I should take the lozenge , oil or tabs , as all 3 are available .
Is there anything else I can be doing myself to help ☺
Question B12, it's a rather individual thing. Some prefer one form, some another. Myself, I'm happy with the sublingual lozenges. But, you'd have to try them to see what suits you best.
The most important thing you need to do is get yourself an increase in levo, because your FT3/4 levels aren't that good. You are under-medicated. If your doctor is just looking at the TSH, then he is wrong. If you had Grave's then your TSH will probably never rise very high, whatever your Free levels, so he shouldn't be dosing by the TSH. He should be looking at the FT3.
"I had very similar symptoms around 11yrs ago , and was told at that point by a consultant that I had graves and an auto immune disease and that these could be causing all the problems"
What treatment were you given then? Do you remember what blood tests they gave you? Especially what antibodies. Though unlikely to remember after all this time, that might help find out what may be happening now
Not sure about any other blood test, but was told my thyroid was over active and was eventually treated with carbonmazola, ( think that was what it was called ) for several months , then was given RAI and put on levothyroxine
Many people seem to start off hyperthyroid (Graves is an autoimmune disease too) and, after treatment, (You said you had RAI) eventually end up being hypothyroid instead. But after what Greygoose said above I'm not sure. Hashi's and Graves are both autoimmune diseases, but have opposite effects because they are the result of different antibodies. I think I read on here that Graves can be difficult to diagnose. Is that right greygoose ?
Not difficult if you do the right tests! It can be difficult to diagnose Hashi's because Hashi's antibodies fluctuate, and you can have Hashes without ever having high antibodies. That's not the way it is with Grave's.
Sweetpea1157 , I've just read in your very first post:
that you "Have been suffering with an underactive thyroid and hashimotos for a number of years now" and now you're saying that you had RAI for Grave's? When did that happen? I haven't had time to read through all your post, but I'm the one that's confused, now.
Think I need to establish properly Wether I have graves or hashis , as im totally confused too . I mean , this all happened over 20yrs ago , when I had the RAI was just told that it would be better for me to be under active than over active , wasn't told anything , just thought well docs know what they're doing so just went along with it after about 10yrs of having the RAI I became very ill , symptoms similar to what I'm suffering now ( except the probs with neck ) and at that time was told I had graves , when I asked what was graves , he told me it was a auto immune disease , but that was about it , nothing else , no explanations , nothing . But still blindly had the confidence that they knew what they were doing . Never ever understood why I had illnesses keep cropping up , just nievely kept taking the medication they kept giving me without question.
It's only since being on here that I am learning and understanding a lot more , but am still finding it difficult to comprehend. 😕
I understand. These doctors have a lot to answer for! They take advantage of innocent patients and count on the fact that they don't understand what's going on! Whatever happened to informed consent?
Whatever was wrong with you, it's rather doubtful that removing/killing the thyroid and making you hypo was best for you. But, they push people into it because they think it's easier for THEM, Unfortunately, they make people hypo without any idea how to properly treating them after wards.
Still, what's done is done and can't be undone. If you did have Hashi's, you won't have it anymore. The Hashi's dies off with the thyroid. If you had Grave's, you will still have the antibodies, but your symptoms won't be due to the Grave's because you no-longer have a thyroid to over-produce hormone - which is what Grave's does. So, what we need to concentrate on now is getting you properly treated for your hypothyroidism.
Thank you greygoose , i think i am starting to understand it a bit better now that you have taken the time to explain in a bit more detail what is happening to me . I am so pleased and fully appreciate the time you have taken to try and help me , I honestly can't thank you enough . I'm still quite overwhelmed by it all , but am truly grateful that I have people like yourself that I can turn to for help and advice . ps , do you have any advice about the new medication that's been prescribed to me by rheumatologist
Hydroxychloroquine, some advice on this would be very helpful please☺
I'm afraid I can't help you with that. I have no knowledge of it. Why not write a new post, with Hydroxychloroquine in the title, so that those that have used it will see and respond.
Hi greygoose, it's the pest again lol ☺ had a phone call late this afternoon from hospital , got appointment with NHS Endo at 9am tomorrow morning, have made a list of all my symptoms of what my body is going through right now .
Do you have any advice please as to what I should be asking , oh ps , read your post about endo's this morning , loved the truthfulness , and also reading other posts on same subject , have to admit , it has left me very sceptical , especially as it's only an NHS Endo I'm seeing
So as said , some advice would be deeply appreciated
This is always the most difficult question to answer, because so much depends on the endo himself. I always say: play it by ear. And, if he says that your symptoms have nothing to do with your thyroid, they must be due to something else, ask him what, and how can you find out? You could say something like: T3 is the active hormone, needed by every single cell in the body, so if there's not enough of it, anything could go wrong, anything and everything could be a hypo symptom because it affects every single part of the body. But, you have to judge your man! That might not go down too well with some of them! In short, I have no idea what to say. Sorry.
Hi greygoose, am just back from endo , he is going to give me T3 to try and see if it will help resolve some of the problems I'm having , he wasn't keen to give me it as one of the side effects of T3 is an increase risk of osteoporosis which I already suffer from , so he is giving me 20 mcg T3 along with 50 mcg of levothyroxine daily for 2 months , then running a blood panel to see if there has been any change , ☺
Thank you Jnetti have looked at article, already have a lot of problems with eyes, hair, diorea, , think i will wait to see endo & see if he can shed some light on this problem as i had a bad episode like this 11yrs ago, & he was not sure what it could be, docs only sent me to see him as i asked if it could be my auto immune, but now they have decided to send me to endo, so fingers & toes crossed they are good. Have enough going on so will not be taken the tablets, as he could not give me a diagnose. Thank you again ☺
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