I'm 33m, 6'3, 160 lbs caucasian and my life has been turned upside down in the last 6 months. My issues started about a year ago when I started having pain when sitting after doing some intense landscaping. In January I was diagnosed with sciatica and eventually got an MRI showing a 2mm protrusion on my l5/s1 nerve. At this point my symptoms included weakness/fatigue keeping me off my feet and pain in glutes and down my left leg and numbness in foot. I couldn't stand / sit / walk for more than about 5 minutes. A little unusual, but fairly classic signs of a back injury. I ended up getting an injection which did not help.
I did a few months of physical therapy and my back symptoms seemed to improve, but my muscle fatigue in my hips/glutes was getting worse. Every time I seemed to be getting better and started to increase my activity, I would end up overdoing it and becoming incredibly sore in my hips to the point i'd have to lay down. It felt like I'd completely overdone it at the gym. On a better day I did two 5 minute walks and a little bit of sitting. I woke up sore for the next 4 days straight.
In mid August I started feeling sick. Fatigued, lousy, and I noticed I was getting muscle twitches in my legs, arms, and torso. I thought it was a bug or virus of some kind but after a couple weeks I went to see a doctor and got diagnosed with hypothyroidism / hashimotos with a tsh level of 36.
They put me on 75 mcg levothyraxine but the next 3 weeks my symptoms just got worse. I felt off, out of sync, numbness in my forearms that comes and goes along with numbness on the left side of my face. In addition, aches and pains in my hips were causing me to have trouble sleeping. But I did notice my strength appeared to be getting slightly better in my legs. I was pretty desperate so I tried changing my diet, cut out gluten, dairy, and grains.
The endocrinologist I saw was concerned and sent me to get tested for adrenal deficiency, but my levels were normal. She switched me to 100 mcg synthroid and then referred me to get more testing done. My ANA came back positive speckled so I saw a rheumatologist who didn't seem to think I had any of those diseases. Tests confirmed negative for lupus and a host of others. She said it's possible it's all explained by thyroid but referred me to a neurologist.
At 4 weeks into the pill, I finally felt some relief. My energy came back, the pain in my hips went away, I felt stronger. I had 4 good days in a row and felt like I was on the road to recovery. But the next week+ was very up and down, with more downs than ups.
-The neurologist didn't seem to think I had a neuro disease after evaluating me, but we did a brain mri and some blood tests. I had elevated b1 (248 nmol/L, normal is 78-185) and b6 (87 ng/mL, normal is 2.1-21.7) which can cause muscle/nerve issues but I'm not sure if this is the source of some of my problems or not because I only started taking b-complex supplements after my symptoms started. EMG/nerve conduction test was normal. Brain MRI came back normal, although they did notate a 4mm radke's cist (appears unlikely to be causing my symptoms based on what i've read about it).
I had another great stretch of about 7 days where I felt like myself again. I thought I was finally getting better. I had my tsh tested again and it was down to 3.8. Then I started feeling out of sync and off again, and symptoms came back as of last Wednesday. Still practically housebound, pain in hips, muscle twitching, fatigued, intolerance of working out. I can walk maybe 10-15 minutes before I start getting weak/sore.
Do you think this can all be explained by hashimotos? Is my body trying to adjust to the synthetic hormones (I'm about 8 weeks in, 5 weeks since I've switched to 100 mcg). I've read that muscle issues tend to take longer to resolve for thyroid issues. Do I likely have something else? Do I have b6 toxicity? Does my back injury have a role in this still?
Medication I've been off and on: diclofenac, gabapentin, tylenol, advil, morphine (only a few times) and of course synthroid
Attached photo: test results from recent thyroid and neurology blood pannels (within last 2 weeks)
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theriverman
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For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Extremely common to have low vitamin levels. Some of your symptoms sound like low vitamin D
Have you had B12 and folate tested?
You're likely ready for next dose increase, hence returning symptoms
Bloods should be retested 6-8 weeks after each dose increase. Dose increases in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Vitamins need to be optimal too
Selenium supplements can help improve conversion of FT4 to FT3
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Come back with new post once you get next bloods tested. Members can advise
Yes I've tested for just about everything - all my other thyroid tests are normal, b12 normal, folate normal. I'm new here, do I need to repost this including this info?
thanks for the info - i've tested twice for b12 and also METHYLMALONIC ACID which were normal. do you think my symptoms are just severe hashimotos and I just need to find the perfect balance / dosage ?
Do you think I would benefit from taking t3 too or should I just wait and see if my test results continue to improve on 100 mcg synthroid. (remember I've been on 75 for 3 weeks and 100 for five+ weeks)
If you think B6 toxicity is a possibility then the simple answer is to stop taking the supplement containing it for, say, four weeks and see what happens.
Although if you already have high B1 and B6 you should probably give up B Complex tablets/capsules altogether and look into individual supplementing of B vitamins that you actually need.
I took a high dose B Complex several years ago and I started getting symptoms of B6 toxicity. Coming off the supplement gave me noticeable relief in a fairly short time. I've avoided very high dose B Complex tablets since then, and I take fairly frequent "supplement holidays" from it as well, and supplement only the B vitamins I know I'm low in or feel better for taking.
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Twitching, cramps, and benign fasciculations (search Youtube for this, if you don't know what it means) can occur with low magnesium, and almost everyone is short of magnesium. The test for magnesium levels is a poor one that can give misleading results. Magnesium is contained in all kinds of cells throughout the body, but in cases of deficiency the body maintains the levels in the blood. Your other cells could be deficient and you'd never know.
Assuming that your kidneys are functioning reasonably well, then taking magnesium supplements is safe - your kidneys get rid of any excess magnesium in urine.
There are lots of different forms of magnesium supplement, and they aren't all worth the money, so look at the above link and choose a good one that appeals to you. Magnesium citrate is popular if you have a tendency to constipation, but avoid it if you have the opposite problem.
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Another possibility is being low in iron. A lot of doctors test just ferritin or just serum iron or just haemoglobin and assuming it is in range they say this is fine. But there is far more to having optimal iron levels than just having one of the things I mentioned in range. You should get the following measured :
I realise you are probably not in the UK, so you will have to source this type of test yourself. It would be helpful, but not absolutely essential, to get a Full (or Complete) Blood Count done at the same time as the Iron Deficiency is tested for.
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Low vitamin D is also a cause of muscle and joint pain. Even people who work outside can discover they are low in vitamin D. Hypothyroidism effects absorption of just about every nutrient there is.
thanks for the response, not sure if you saw the test results I posted above recently... I got off the b complex about a week ago after i saw the results.. I was also taking magnesium supplement for a few weeks, but I got scared after seeing results so I stopped all supplements for the time being
Do you eat a low salt diet? Your sodium level is right at the bottom of the range.
I'm talking purely from personal experience here, but I feel very poorly if I have low sodium or low potassium. I feel best with them both being middle of the range or slightly better.
Do some research into the dangers of a low salt diet.
My wife does cook with salt, but I have cut out a lot of salty snacks with my diet change (no gluten/grains/dairy)... I find myself craving it sometimes, I will try to add more to my diet.
a) You simply aren't including enough for good health in your diet. Your very low in range sodium suggests that more salt in your diet would be a good idea.
b) Another issue, that could explain some of your health problems is that you might be suffering from poor adrenal function and low cortisol. Salt craving is a known symptom of very low cortisol.
Note that it comes in three flavours, described in the link - primary, secondary and tertiary - and doctors often rule out one and don't bother testing for the others. So be sure that you get ALL the right tests done that are appropriate to your symptoms.
Also be aware that running out of cortisol (Addison's Disease) can be fatal. So this isn't a condition you can think about for a while then decide to test for and treat in six months time :
I was tested for adrenal deficiency and turned out to not be a problem, although I guess i'm not entirely sure if i was tested for all 3.. they did several blood tests on my cortisol levels and the endocrinologist told me i was good
Okay then - just include more salt in your diet. Also look up something called the "adrenal cocktail" (dozens of recipes available all over the web, and they are all fairly similar) and take one every morning. Also make sure you eat enough protein first thing in the morning.
Hi, Great advice for for you from the others....I love this place.
I had all those symptoms at around that TSH. Heed to all areas mentioned as well as not excluding simply be under replaced. Eight weeks is a very early days in adjustments. Keep the faith, it's a winding path to the sweet spot, all your systems and cells need to time for recovery. Keep researching and monitor baseline thyroid levels as suggested. In the UK we have very affordable private lab tests. Hope you can access that in US.
Theriverman, do you have an update on your symptoms? I’m having very similar symptoms, particularly the muscle twitching. I’m currently awaiting diagnosis from endo. Had TGaB antibodies show up so likely Hashimoto’s. I’m 45 yr old male and the symptoms have been persistent for past 3.5 months
I think it ended up being adrenal related afterall. After taking adrenal cortex and fludrocortisone most of my symptoms went away. I’m still on those meds though but doing better. Check out the stop the thyroid madness protocol and the Adrenal Fatigue and Thyroid Care Facebook group.
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