I'll try and keep this as short as possible....5 years ago I was diagnosed with graves disease and at the same time I started with joint pain which started in my hands then spread to my knees,hips, wrists and elbows. After a long battle with doctors I was finally refered to the rhuematology department where one minute I'm told i have lupus and the next my symptoms are all due to thyroid problems.
2 years ago I had a thyroidectomy in the hope of solving my thyroid problem and this terrible joint pain. It hasn't worked and my thyroid levels now swing from high to low constantly despite me religiously taking my medicine at night on an empty stomach etc. I'm currently on 200mg thyroxine and my tsh was 11 at my last check. Has anyone else experienced their thyroid swinging one way and then the other every few months? Is there anything I can do to stablise it?
Also with the joint pain I have the rhuemy team blaming it on the thyroid and the thyroid team blaming it on the rhuemy while I'm stuck in the middle feeling really poorly. What I don't understand is when my thyroid levels are "normal" I still have the joint pain and at the moment while my levels are way out I have no joint pain so how can this be a thyroid thing?
I'm on a whole list of medication azathiroprine, amitriptiyline, plaquenel and steroids for the arthritis which seems to have calmed it down some what and thyroxine for my thyroid problem.
I've been tested for Addison's disease as my endocrine doc thought I might have that but the test was normal.
I'd be grateful to hear if anyone is going through similar as I'm only in my 20's and feel like an old woman. Also is there anything I can do to make my thyroid levels stable and does anyone have any suggestions what might be causing it to swing high and low so often
Thanks in advance
Xxxx
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LULU85
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Do you have results for your FT4 and FT3? I'm wondering whether you aren't converting FT3.
Have any of your specialists considered trialling a combination of Liothyronine (T3) in combination with Levothyroxine (T4) or T3 monotherapy to see whether it stabilises your TSH and helps with your joint pain? Thyroidless patients often don't do well on T4 monotherapy. eje-online.org/content/161/...
In my case Levothyroxine caused the pain and other symptoms which didn't resolve until I got Levothyroxine out of my system and I can now tolerate it in combination with T3 which calms the unpleasant effects of T4.
Thanks for the reply the blood results I have written down are as follows( I didn't write results down at first so only have a few but hopefully you will understand them/see a pattern)
March 2011
T4 17.8 tsh 4.2
December 2011
Tsh 6.9 t4 19.2
Jan 2013
Tsh 2.4 t421
Feb 2013
Tsh 1.1 t4 21
July 2013
Tsh 6.2 t4 21.
September 2013
Tsh8.5 t4 16.7
November 2013
Tsh 3.9 t4 19
January 2014
Tsh 1.7 t4 19.8
Then were dine march and the tsh was 9 but don't no t4 and last test the tsh was11 but again wasn't told the t4 even tho I asked.
I didn't have pain before I started Levothyroxine after surgery and RAI for thyCa.
Your TSH is swinging because your body wants more FT4 to convert to FT3. Your FT4 isn't bad at all so you may not be converting well. T3 in combination with T4 would help address any conversion issues.
If, as ReallyFedUp suggests, you have Hashimoto's in addition to Graves, the thyroid peroxidase (TPOab) antibody test will confirm this. I'm not sure it matters as treatment is the same as you are on now, but some Hashimoto's patients do better on a gluten-free diet.
When you say that you have no joint pain when your levels are out, I suspect this means that doctors think your levels are out, because of TSH testing, which is hopeless. Possibly their "levels out" is when you feel slightly better. Can you look at your history and see whether that is the case? I also think you are not converting the Levo to T3, so however high your dose, it will not be helping and maybe making you feel worse, if it is pooling in your blood. You need T3 testing to show this, however and you do not appear to have many of these. Joint pain is caused by being either hypo or hyper so makes it difficult to know what is happening but in your case your TSH is too high and you are hypo most of the time, hence the joint pain. My feeling is you need T3 added to reduced dose of T4 and best of all would be NDT, if you can get hold of some, either through a private consultant or buying from USA.
All of your supplements etc may be interfering with the uptake of levothyroxine and therefore resulting in a high TSH level.
My own personal opinion is that people who have their thyroid gland removed and not doing well on synthetic levo should have T3 added or T3 alone. Some do fine on T3 alone (I am one I am hypo) but I know they are very reluctant to do so. With T3 it will go directly into your cells with no need of conversion from T4 and therefore you may feel much better.
A thyroid gland produces hormones, T4, T3, T2, T1 and calcitonin and the nearest to that is Natural Dessicated Thyroid hormone which, through false statements made by the British Thyroid Association few prescribe. It is made with either pigs or cows thyroid gland so is more synergistic to our bodies than synthetic products.
These vitamins are helpful for us particularly the last 3 which help in the conversion.
Thank you for all the replies. What is the drug called for t3? Im still learning things (even though ive suffered for a long time) Is the levothyroxine I take the synthetic t4? I have an appointment coming up with the endocrine doctors and I want to feel ive made some progress with them as to date my thyroid problem has not been treated.
With regards to my comment on having no joint pain even though my thyroid is out, what I mean is that I know its out (blood test back this up) due to the symptoms I get with the thyroid been underactive....fatigue, heavy periods, weight gain, mood etc etc.
Its difficult because I have alot of Lupus symptoms rashes, mouth ulcers, joint and muscle pain, fatigue, positive ana, but I dont have any positive lupus anti-bodies which is why some rhuematology doctors say its lupus (due to symptoms etc) and other say its not and its due to thyroid. Im been treated the same as someone with lupus and my joint pain has responded to the treatment but I still get an increase of joint pain and other symptoms before a period.
Im just sick of one department blaming it on one thing and the other department blaming it on the other without either really ruling things out to prove its not a rhuemy problem or a thyroid problem.
I had my anti-bodies checked and they were positive before I had my thyroidectomy...I dont know what they were positive for but im assuming its to do with graves disease as this was the diagnosis I was given. Then with my last pregnancy they were checked again and they were negative. I dont know if they check anti-bodies for all thyroid conditions when you have been given a diagnosis for graves or if its just for anti-bodies associated with graves.
Is there anything I could ask my endocrine to test for? To help prove all my symptoms are still thyroid related. Are endocrine doctors able to prescribe t3 or is this something a private doctor can only prescribe?
Sorry if im sounding thick Im just trying to gain as much info as possible so I dont feel like ive been fobbed off when I have my appointment....if it ever comes through as been waiting since march to be seen and been told it will be end of July at the earliest before im seen.
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