I had all of the classic symptoms of thyroiditis. In Jan of 2013 my numbers were:
Creatine Kinase: 636 H (Normal Range 29-143)
TSH: 95.58 H (Normal Range 0.4-4.5)
T4, FREE 0.2 L (Normal Range 0.8 - 1.8)
And I had another ton of test and numbers, but I won’t go through all of that.
Put me on 137mcg of Levo
Lost about 15 pounds, hair was falling out, hight strung, burning in my trapezius, bad reactions. At this point:
TSH was 1.79
T4 Free was 1.9
Thyroglobulin Antibodies - 2,615 H (Normal < 20)
Thyroid Peroxidase Antibodies - 191 H (Normal < 35)
Have had tons of blood work done. Aching all over. Went off Levo. GP send me to Endocrinologist. Went to 0.5mg Levo. After a month, still a mess. Legs hurt worse than ever. Back to Endo for more bloodwork:
TSH: 8.89 H
T4 Free 0.9
T3 Free 2.7 (Normal range 2.3 - 4.2)
2 months later, another blood test. Levels started going up.
TSH: 14.93 H
T4 Free 1.0
T3 Free 2.4
Took me off Levo, wasn't working at all. Went to Synthroid, 75. Five weeks later:
TSH: 7.24 H
T4 Free 1.1
Decided to up dose by adding one 150 dose per week (to the daily 75).
TSH: 1.68
T4 Free 1.4
That was last August, Five months later,
TSH: 6.77 H
T4 Free 1.0
Went to Synthroid 100 daily. Two months later:
TSH 1.52
T4 Free 1.2
That’s where I am now. My legs are really hurting, and I’m still tired all of the time. Went in for another blood test to try to figure out why. Now my numbers are:
TSH 1.38
T4 Free 1.1
So my question is, I’m waiting to hear from doctor. These numbers are supposedly in range. Most of my symptoms are gone. But the leg pain is still bad (can barely walk when I first get out of the car). Still a lot of lethargy. Anybody familiar with this? Is is possible my legs are permanently damaged? Should I be looking for something else on the leg problems? Any suggestions greatly appreciated.
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5858, is the reason for your elevated CK being investigated? Another poster mentioned that CK is a marker for muscle breakdown.
I'd recommend getting FT3 retested and rT3 in case your having conversion problems. It's worth asking for a trial of Liothyronine (T3) in combination with Synthroid to see whether your leg muscle pain improves.
Low/deficient ferritin, vitaminD, B12 and folate can also cause fatigue, bone and muscle pain. Deficiencies are very common in hypothyroid people.
Thanks Clutter. I B12 was 609 in January 2013, before I was on any medicine (normal range is 200 to 1100). The folate serum was 14.6 back then. And normal is > 5.4. Vitamin D wasn't checked. CK was tested and I got the hight dose of Levo, which brought down the CK down to 142 (ref range 29 - 143).
The T3 was tested in Feb 2013 and April 2013 and was normal then.
Truthfully, I had suffered for several years before any diagnosis. I figured maybe it was just aging or lack of exercise. But sometimes it got so bad that I thought I was having a stroke or heart attack or something and actually ended up in the ER. So I guess what I'm really wondering is if all those years of just ignoring are still haunting me. Yes, there has been some improvement since my diagnosis and treatment. But will I ever be all the way better? Or have I some how done so much damage by not getting treatment that I may never lose these symptoms? Has anybody else experienced anything like this, and is there hope for me?
5858, Definitely check your vitD which, if deficient, can cause considerable muscle pain and have your magnesium checked too, although you may as well go straight to supplementing as most of us are mag deficient due to mineral/soil depletion.
I would also try an increase in Synthroid. Your TSH 1.38 is higher than many would be comfortable with. TSH just above/below 1.0 suits most people but some need a lower TSH 0.5, or even suppressed, to feel well. If that doesn't help you may need to consider that Synthroid isn't working for you and either add in T3, use T3 only or try NDT. I'm sorry that none of these options are going to be a quick fix.
The other thing to consider is food allergy. Your Tg antibodies were off the scale. Autoimmune disease often starts in the gut and many Hashi patients benefit from gluten-free, some also cutting out dairy and sugar.
Hypothyroid symptoms often develop over years/decades before diagnosis but are usually resolved when optimally medicated, although it has to be acknowledged that recovery often isn't 100% and some say closer to 80%.
Thanks again Clutter. I have been supplementing with vitD about 3,000 iu/day. Do you think I should maybe stop taking it before the next blood work to get an accurate reading? If so, how long before the next blood work? And what do you think about taking the mag now vs. waiting until after the next blood work? I'd like to get an increase in my meds, and will suggest it to the doc. But he might resist, saying that my numbers are normal at this dosage.
I was tested for gluten and ciliac but nothing abnormal showed up.
5858, There's no need to stop taking vitD before the test but don't take it on the morning of the test and you can start mag now. K2 and magnesium are thought to be synergistic with vitamin D and you'll also need zinc which is synergistic with magnesium. Take magnesium until you get diarrhoea then step back to the previous dose to find your ideal dose. Mag oxide is hard to absorb so look for citrate or chloride. You can also put mag salts in the bath or buy mag oil spray.
You need to persuade your doctor to look outside the range and at least trial a higher dose to see if it helps with your leg pain. Normal within range isn't necessarily optimal for you. If your doctor trots out the atrial fibrillation and osteoporosis bogey tell him/her that some people do need a suppressed TSH to feel well and cancer patients are suppressed for at least 5 years. 2 yearly Dexa scans can monitor bone mineral density and ECGs can monitor heart if atrial fibrillation is a concern. If your doctor refuses to consider your request to see whether it lessens your pain it might be time to find a more amenable doctor.
5858, Hi, this is an excerpt from an article in Pulse Online for your information. It was by Dr Toft who was President of the British Thyroid Association. If you email louise.warvill@thyroiduk.org she may be able to let you have a copy of the article:-
6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?
The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).
Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.
I had the same leg pain. I get it when my levels are either too high or too low. Sometimes I feel okay, other times like I cannot take another minute of the pain. It is awful. For me, it is all about thyroid levels and t4 alone didn't make it ease. I don't tolerate t3 well, so it is difficult to get the levels correct. But my leg pain did ease when I added t3.
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