I've had hypothyroidism for aeons. But it's now got to the point of requiring medication.
I tried a tiny dose of levothyroxine several year ago, 25mcg a day, and nothing appeared to be happening.
When this was increased to 50mcgs a day within weeks I had joint pain that was only relieved when I stopped taking the Levo.
My endocrinologist and I think I need to try something again. I've been taking a low dose of Bovine Armour - 200mg a day, but I seem to be getting joint pain with that as well!
With my familial history for arthritis it's important I take something that's not going to affect my joints.
Is there anyone else that's had problems with joint pain that's found something that's "kinder" to joints?
TIA.
;-D
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madcyclistuk
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Bloods should be retested 6-8 weeks after each dose increase and dose is increased slowly upwards in 25mcg steps until TSH is always below 2. Most people when adequately treated will have TSH around or under one.
Typical eventual dose of levothyroxine is approx 1.6mcg per kilo of your weight per day. So unless very petite likely to need at least 100mcg levothyroxine per day
Many people find different brands are not interchangeable
Always sticking on one brand
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12
No replacement thyroid hormones will work unless vitamin levels are OPTIMAL
Joint pain is frequently low vitamin D
ESSENTIAL To also test both TPO and TG thyroid antibodies at least once
At least 90% of primary hypothyroidism is autoimmune thyroid disease , also called Hashimoto’s usually diagnosed by high thyroid antibodies
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
Ever had ultrasound scan of thyroid?
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
On NDT or T3 ….day before test divide daily dose into 3 smaller doses spread through the day. Taking last 1/3rd of dose approx 8-12 hours before test
If on levothyroxine last dose levothyroxine is 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in the U.K.?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Like others here, I don’t think it’s the Levo causing the issue—it’s going to be that you’re not taking enough.
I don’t know if it helps to think of it this way, but if you’ve been hypothyroid for years—which you have—then every cell in your body is effectively on a “go slow”. They’ve been lounging around in deckchairs, snoozing in the sun.
So when you start taking Levo, those cells start to wake up a bit. They’re a bit stiff from being asleep so long (yes, this is an analogy 😂) and suddenly being stirred from virtual slumber is quite painful! I suspect you need way more than 50mcg Levo. Once you’re heading towards the right dose I would expect the pain to ease off a bit but I have a feeling things may get worse before they get better.
Oh, and just to add—if you’ve been hypo for aeons, there’s a strong likelihood that nutrient levels are in your boots—low Vit D, low B12, low folate, low ferritin…
You may need more than thyroid medication to get things working again—has your doctor done tests?
Yes, I had joint pain within hours of starting Levo. It was instant joint pain. I kept asking my doctors and endos why this "arthritis" had come on so suddenly and I received no answer. It seems that Low TSH doesn't cause osteoporosis, i.e. bone loss, it causes drying up of cartilage. It happened to me in my knees starting hours after taking Levo. And for what it it worth, it was not alleviated when I switched to Armour thyroid. the cartilage in both knees just disappeared! I have had one knee replacement and I am awaiting my second in September. And just fyi I asked my "arthropod" if everyone who passed through his surgery had low TSH and he said, "NO". Now that is just one doc, I will ask more and see if any can tell you that most of the people with osteoporosis have low TSH, and I will report back.
Thank-you everybody for your thoughts and advice it's much appreciated! I've had contact with my endocrinologist and we'll be looking at blood test results this week and taking it from there.
One thing we will be looking at is, because he's unable to prescribe NDT on the NHS is a combination of T4 T3 therapies instead.
But bloods first!
I'm taking a raft of horse pill size vitamins and minerals and, I'd've thought, their levels will be good.
I'm taking a raft of horse pill size vitamins and minerals and, I'd've thought, their levels will be good.
I hope you're taking them because you tested first and need them. It's not a good idea just to take supplements willy nilly. Some are fat soluble and any excess is stored and can lead to toxicity.
What exactly are you taking?
Testing key nutrients is essential, then depending on results address any low levels or deficiencies:
Vit D - fat soluble so must be taken at correct dose if needed along with important cofactors of magnesium and Vit K2-MK7
B12
Folate
Ferritin - taking iron without doing an iron panel to see if you need it leads to toxicity
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