Hi, it’s my first time posting here and I am wondering if anyone has had a similar experience to me or is able to offer me any advice based on their knowledge and own experience.
I am a 40 year old mum of two children under 10 and first noticed that something was wrong early last year when I started having trouble standing up from a sitting position and I started slowing down in the gym. I eventually went to the doctors and discovered I have Graves’ disease and a hot nodule.
My levels in June last year were;
FT3 - 14.8 (range 2.4 - 6)
FT4 - 42 (9 - 19)
TSH - <0.01 (0.350 - 4.940)
TPO Antibodies- 102.8 (0 - 5.6)
I was put on Carbimazole 20mg once a day, which has since been steadily reduce and I am now on 7.5mg a day.
My levels last month were;
FT3 - 3.7 (2.4 - 6)
FT4 - 11 (9 - 19)
TSH - 2.372 (0.350 - 4.940)
TPO A/B - 52.7 (0 - 5.6)
The problem is my muscle weakness is getting worse by the day. I now have a drop foot and even struggle to squeeze toothpaste out of the tube. I also have constant pins and needles in my feet.
I had a muscle biopsy a few weeks ago and am waiting for the results. If this is clear then the next treatment on the table seems to be total removal of my thyroid.
I would appreciate any advice or sharing of any similar experiences.
Thank you for reading.
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HopefulHenry
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My Endocrinologist advised I had Graves in conjunction with a neck scan but now you mention it I cannot find a test result to confirm the diagnosis. I will ask her for medical proof of Graves tomorrow.
I did have scans and a biopsy on the nodules.
The range from the Endocrinologist are as below;
fT3 2.4 to 6
fT4 9 to 19
TSH 0.350 to 4.940
She seems happy with my results but I will discuss it further. It certainly looks like my T3 and T4 levels have dropped too low.
I wish you all the best on your own health journey.
I have carbimazole to lower hyper levels. The nodule itself although large does cause issues with swallowing or breathing.
Nodule/s do not remit so are often treated definitively early on.
Radioactive iodine was mentioned at first appointment but I’ve delayed it (forever, hopefully)
A surgeon I saw agreed to remove the thyroid lobe with nodule but again I rather avoid for now.
I do get aches but more often when thyroid levels are low or when nutrients are low.
I also get toe tingling (toe tips) & numbness at based of toes. which I not been helped with. GP says it thyroid - see specialist, specialist says it diabetes - see GP. Had a nerve conduction test which was within limits so they have no interest in looking further.
Are these readings from June last year your initial blood tests at diagnosis ?
Do you have the ranges for these results ?
There is no antibody reading there for Graves Disease -
the TPO antibody signifies Hashimoto's Auto Immune Disease -
you can have Hashimoto's running alongside Graves but Graves treatment takes precedence.
Both Graves and Hashimoto's can present initially in the same way and the only way to tell them apart is through the antibody blood test.
Both Graves and Hashimoto's are Auto Immune disease for which there is no cure.
Graves is treated with an Anti Thyroid drug, such as Carbimazole - whilst Hashimoto's is not treated as the T3 and T4 are transient and fall back down into range themselves.
We need to know that the Graves antibody is positive which is the medical proof of diagnosisand is generally written as a :-
TRab - a Thyroid Receptor blocking or a TSI - or a Thyroid Stimulating antibody or written as a TSHR antibody alongside a number / range .
All the Anti Thyroid drug does is semi block your new own daily production of thyroid hormones while we wait for your immune system response to calm down and hopefully your thyroid reset itself without the need for any drugs - a bit like a plane put in a holding position while it waits to land.
Your T3 now looks very low - and with your T4 under the range - you can't function normally and likely trying to do more on less and less thyroid hormone support which is leaving your totally exhausted.
You TSH is now too high and you need the dose of AT drug titrated down again -
When do you next see your endo consultant or is your doctor managing your treatment ?
When metabolism is slowed too much your body will struggle to function and this includes you digesting and extracting key nutrients through food, and no matter to clean and well you eat you risk your core strength vitamins and minerals nose diving through the ranges compounding your ill health further.
If you haven't had your ferritin, folate, B12 and vitamin D run recently suggest you get these done and post the results and ranges back on here for advise as just being in a NHS range somewhere is not optimal and some ranges too wide even to be sensible and we need optimal ' everything '.
If you do have Graves Disease the most recent research is suggesting that the longer one stays on the AT drug the better the long term outcome for the patient :
The first readings were from my GP and they did think initially that I had Hashimoto’s but my Endocrinologist advised me it was Graves. I have been looking for a test result to prove this but cannot see one. I will ask her tomorrow by email for medical proof.
I am getting a second opinion next wee, so hopefully that will make things clearer what’s really happening.
Sorry I don’t know anything about hot nodules or how doctors deal with that but when I had Graves in 2012 it was muscle weakness that I noticed first. I would get down to ground level to take photographs and unless I had a handy tree or my husband nearby I couldn’t get up unless I crawled to something solid to hold on to. At that point I just thought I had too much photography gear in my backpack! Little did I know.
I had no energy or strength and I was on my knees with tiredness. I was treated with block and replace which is different to how you are being treated - sounds like you your carbimazole is being titrated down. Eventually I went into remission and my muscle strength went back to normal but it was quite a long time before I was able to go back to doing long walks like I had done before. I kept going to the gym though but like you, I dialled everything down, same with Pilates but my teacher is a physiotherapist and she adapted everything for me so that I could cope. I just didn’t want Graves to rob me of everything I enjoyed doing.
You really need to find out what is causing the pins and needles in your feet though don’t you.
Could you be diabetic? Although I imagine that would have shown up in your blood tests.
You aren’t by any chance taking statins? I was prescribed them some years ago and within a week my muscles were so weak I could barely walk. I cut back and stopped the statins completely after a few weeks and my muscles went back to normal.
I really hope your muscle biopsy results are helpful when they come through.
Hello, thank you so much for your reply. You inspire me that there is light at the end of the tunnel.
Not diabetic and not taking statins. I am also under the care of a neurologist for the muscle weakness as my endo doesn’t think it’s related to the thyroid but I think she’s mistaken.
My muscle biopsy results came back yesterday and showed nothing out of the ordinary but I have an appetite with the neurologist tomorrow to discuss further. He did prescribe me a beta blocker a few weeks ago as he said he may help but it made me feel worse (stopped taking after 10 days), probably no surprise given my relatively low fT3 and 4. I will quiz him on that tomorrow.
I am pinning all my hopes now on a second opinion next week.
How long did the muscle weakness last for you before it started improving?
Well, that rules out a few possibilities and it’s good that the muscle biopsy came back showing nothing out of the ordinary although I have often found that what doctors consider alright isn’t always so for the patient.
I have asthma so I wasn’t given beta blockers - basically I stuck it out until I reached a decent level with the thyroxine. I don’t blame you for stopping them.
I can’t remember exactly how long I felt weak for - my treatment took exactly a year and after the first five months I started to get what felt like hyper symptoms when I needed an increase in my levo. After the year I felt a lot better - not tired or ill or anything but it was quite a while after that until I suddenly felt like going for a really good long walk - but then I was probably a lot older than you are - I was in my mid 60s back then.
I started doing my own home fingerpick blood tests quite early on in my treatment because my consultant was only testing TSH and T4 as well as talking about radioactive iodine should I relapse!
I was able to have B12 tested because my mother had problems with her B12 but no one was prepared to test my vitamin D so I did it myself. I test my vitamin D a couple times a year and do one of Medichecks home tests at least once a year to find out what my vitamins and minerals are up to. You have had good advice about all that from SlowDragon and the others.
I’d say be sure to get and keep copies of all of your blood tests, jot down how you feel - I did it on a daily basis but I don’t have two young children at home but make a note of anything you think is important about how you are feeling and also jot down any questions you want to ask the doctor at your consultation so that you don’t end up back home thinking ‘Oh I forgot to ask about …’ and be a partner in your treatment - don’t be bullied into doing anything you are not 100% happy with.
Good luck with the neurologist and your second opinion
Thank you, I will discuss this with my endo and add the tests you recommend when I have my bloods next week. My endo just seems interested in fT3 and 4 and TSH levels.
Muscle weakness and muscle pain were the main symptoms when I was first diagnosed with Graves' disease. It is called thyrotoxic myopathy and if that is the only cause for you muscle weakness then it should resolve after your thyroid levels normalize again. In my case, that took about 2 months on Carbimazole.
Just wanted to let you know and I hope that you are doing better by now.
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