Hi I’m new on here but not new to thyroid problems! I got diagnosed with Graves/overactive thyroid in 2011 in France and had excellent treatments being put on block and replace. I went into remission but unfortunately came back when I moved back to uk. I underwent radioactive treatment so am now permanently hypo. I am really suffering lately from joint pain. I have osteoarthritis in my knee and foot. The problems I am having is that my ankles and lower legs swell and are painful. Few days later that goes and painful knees then stops. Now I am in agony with pains in my groin, hip and bum!!! I am on Levo 125mg and also curcumin, painkillers of every sort but still in agony Does anyone else have this problem. I am 62 and fed up with people saying it’s old age.
Sorry for going on......
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Noisette13
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In order to receive a more detailed answer it would be advisable to post current thyroid blood tests, including T3 and T4 as well as a TSH and also include your ferritin, folate, B12 and vitamin D results.
People better able than myself will then be able to advise, should you need any dose increases or adjustments to your medications, in order to improve your overall health.
I am with Graves Disease and had RAI in 2005, resulting in my now managing Graves plus thyroid eye disease and hypothyroidism. I joined this site a few years ago and started my journey to better health and you can do this too.
You might like to look at the following :-
Elaine Moore - Graves Disease a Practical Guide - this lady wrote this book when going through her treatment for Graves back in the late 1990's. She too had RAI treatment and found no help, so wrote the book to help other Graves patients. She now runs a very well respected and researched website in the States, so medical protocol maybe slightly different but it is all things Graves for all Graves people.
Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism. This is a very useful book explaining the importance of this major gland and the implications of what can happen when the thyroid isn't working well or has been removed or ablated. The author is Dr Barry Durrant - Peatfield, but his writing easy to read, insightful and sometimes funny.
Tired Thyroid by Barbara S Lougheed is written by another lady who has Graves and treated with RAI. Amongst other things she goes into great detail debunking the TSH blood tests for Graves patients in particular as we have anti bodies that can sit on our TSH giving a false low read and end up undermedicated when T3 and T4 haven't also been evaluated when having check up thyroid blood tests. I believe this lady now also runs a blog, for ease of access.
It's a massive learning curve, there is much to read and understand but you can get better sometimes with very simple steps that may not have been suggested by your doctor. If your doctor is unable to offer the blood tests as detailed above there are private companies you can use, as detailed on the Thyroid uk website and once with results repost them with their relevant ranges and then more detailed, considered opinions will be offered from people with the necessary knowledge to put you on the right road to better health.
Your T4 is 75 % through it's range and your T3 is scraping the bottom at 3 points into a range of 30 equalling just 10 % through the range. Ideally your T3 and T4 should be balanced and generally speaking most people feel well when both the T3 and T4 are in the upper quadrants of their ranges.
This tells us that your conversion of Levothyroxine into T3 is not good. There is room to increase your Levothyroxine and there maybe some chance there that you can convert a little bit more Levothyroxine into T3 but ultimately, it's questionable that this will solve the issue. Should you increase your T4, your TSH will probably go down, and most doctors don't like a low or suppressed TSH and believe that you are then over medicated.
Conversion can be improved by making sure your vitamins and minerals as detailed above are optimal, and not just anywhere in their ranges, and some people aid their conversion with other minerals, eg selenium, magnesium, and or zinc.
A fully functioning thyroid would be supporting you daily with approximately 100 T4 + 10 T3. T4 is a prohormone and your body has to be able to convert it into the T3 which is what the body runs on. Some people can get by on T4 alone, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently.
Personally speaking, having had radioactive iodine and now having a greater understanding of how this treatment works, I believe you may be better advised to think about taking a combination of T3 and T4 thyroid hormones. In this way you can adjust both the T3 and T4 independently to find a level of well being acceptable to you.
There is also the most complete thyroid hormone replacement currently available namely, Natural Desiccated Thyroid, which contains T1, T2 T3, T4 plus calcitonin and anything else that we currently haven't identified. It is pigs thyroid, dried and ground down into tablets, referred to as grains, and was the only treatment option, prior to the advent of Levothyroxine and the blood tests regime of the 1960's. It has been in use for over 100 years and you dose to the relief of symptoms.
Having been refused a trial T3 by the NHS last year I chose to purchase T3 and NDT myself and conducted my own trials. T3 worked well for me, as does NDT.
I am currently self medicating with Natural Desiccated Thyroid and getting my life back. Sadly I have received very little help or understanding within the NHS system these past five years but I am seven months in to self medicating and now moving in right direction.
There is a lot to take in, it may seem daunting, but it does actually register, even if you have the dreaded brain fog, and you can turn things around for yourself. You have made the first step, simply posting a question, who'd have thought !!!! ???
Thank you so much for your reply and time taken to explain. I work at my drs so tomorrow I’m going in and try to get appointment for a chat!!! It’s just so frustrating isn’t it that nobody has a clue. It’s a shame a few more drs/specialists don’t have personal experience then they would understand instead of fobbing you off saying it’s in range so normal. My dr is good bless him. Puts up with my moaning. Again thank you for explaining
Well, it's just " my take " on things I've learnt on here and through those books.
Doctors work to guide lines, otherwise they can become ostracized from their own profession and risk loosing their livelihood. Dr Barry Durrant - Peatfield, is in a unique position as I believe he takes Natural Desiccated Thyroid to treat himself and ultimately he asked that his his name be removed from the doctors register.
Hopefully your doctor may run the vitamins and minerals for you.
Hopefully, he may like to discuss your blood tests with you, and acknowledge your conversion is poor. He may not be able to prescribe T3 himself due to CCG restrictions , but maybe he could suggest a referral to an endocrinologist who might.
Well, I hope I 've helped a bit, check out the posts on here, it's an amazing website, everybody is so supportive and it's suprising how much you can pick up and learn by reading others questions and answers.
Have you had a CT or MRI scan of your hips or lower back? Pain from the lower spine or hip can cause pain in the groin area and bum as well. This pain radiates to other areas. The hip muscles are also attached down the leg to the knee - and often with hip issues you will get terrible knee pain. Just a thought ... hope you feel better soon. All the best.
That’s what I was thinking because of all the radiating symptoms you have. It’s a good idea to check with a professional about it - and if physio doesn’t help you might want to investigate further. I myself have back issues - I had a spinal fusion 23 years ago - and have been reasonably well since with the occasional spinal epidural every 5 years or so - but it couldn’t hurt to get it checked. All the best.
Thank you I will. I just feel so rubbish and about 100. Just been on holiday with good expectations of exploring and couldn’t walk anyway so cheesed off!!
I feel you, believe me .. been there, done that and have the tee shirt to prove it. And I am sorry your vacay got ruined and that you are in pain . Good luck with therapy and best wishes.
Another thought - while joint pain is certainly exacerbated if you are undertreated for your thyroid - something that has worked well for me (and you would have to try it to know if it works) is acupuncture. When my back problems flare up, I have found that a few acupuncture treatments by a skilled practitioner (mine is a Chinese physician) can work wonders and give relief. With back issues - she has told me if it does not work after 5 treatments - don't waste your money (she's very honest) because it will not really help and you probably have an underlying structural problem that needs fixing some other way. Hope this helps you today, and all the best.
Hi Noisette you are not going on I suffer with the same pains and sometimes it's hard to remain positive - and yes if one more person says its 'old age' I might kill them - Im 56, 😜. The only thing that seems to have improved the pain for me is a massage machine I bought about 3 weeks ago - huge improvement in upper body - some improvement in hips, knees and ankles. It was very expensive but the pain and being unable to walk made me try. It's not a cure - they were very definitive about that but it does ease the pain and makes my joints less stiff. If you are interested I can send you the details but I only have my own experience not sure if anyone else on the site has used something similar. 🤔
Mrsbuns, I wouldn't have thought to mention it, but I also have one of those machines. Thought it was going to be a bit of a gimmick, but actually it's brilliant! I get stiff areas across my shoulder blades, and the machine sorts them out almost immediately. I now try to give myself a massage every week even if I don't get pain.
I've got quite a small one that is cheaper than some. It's one bulky unit that contains two massage heads each with three fingers poking out. The heads rotate round and the fingers do the massaging. It's mounted on two substantial straps. In the photos you see a woman with it held on the back of her neck with the straps coming down in front like a waistcoat. But actually it's a lot more flexible than that, I hold onto the straps and can slowly move it around the whole of my back, and adjust very accurately where I massage. It is also easy to use on hips, legs, and even jaw.
Yes my husband was not convinced - especially as it was so expensive - but when i started to be able to walk without the walking sticks he changed his mind! My biggest improvement has been arms, fingers, shoulders - the bottom half still gets extremely stiff but without using it the pain becomes debilitating. God if the Doctors would just treat our symptoms and not just say 'within range' we would not be in this position! Hope it keeps working for you
Hi Noisette13, I am 44 & get pain in my joints due to hypothyroidism & Polycytheamia. I get mostly in back & hips. Nothing seems to relieve, have tried anti-inflammatory’s too. So it’s not an age thing, it’s what ur suffering with causing you pain. Hope you get some relief soon.
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