I have suffered with underactive thyroid for around 4/5 years
Started on 75mg Levothyroxine had regular repeat tests over the years and doctor has just increased my Levothyroxine dose each time as my TSH has not reduced
my latest result was a TSH of 37 and I am on 200mg of Levothyroxine a day currently
I have recently had issues with bone and joint pain and recent blood tests have indicated low bone phosate levels - do you think this could be linked to the Levothyroxine medication?
The medication does not seem to work for me and doctor hesitant to offer me any other support! Any one else tried anything else or any advice for me.
TIA
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Jadewhitcombe
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Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you taking
Do you always get same brand
Taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours
Some like iron, calcium, HRT, magnesium, vitamin D tablets, PPI at least 4 hours away
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
When were vitamins last tested
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Is your hypothyroidism autoimmune
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
So you could genuinely not be absorbing levothyroxine…..or TSH could be falsely high
Without full testing it’s impossible to tell
You need B12, vitamin D and full iron panel test including ferritin tested now …….via GP ideally
Once you have FULL thyroid and vitamin results ….book consultation with thyroid specialist endocrinologists
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Quite incredible that you could be taking 200 micrograms of levothyroxine but still see a TSH of 37.
There seem to be a few possibilities - which would include:
The test results are not reflecting reality;
The levothyroxine dose is not getting into your bloodstream;
You are simply not able to use the levothyroxine;
You are producing too much TSH.
Test results can be affected by many factors. When a TSH is that high, the lab should have done Free T4 and (I'd hope) Free T3. Did they only do TSH?
I'd have hoped that your doctor would have questioned this result and contacted the lab to see if anything might be interfering. One thing they should do if it looks suspicious is send a sample to another lab which uses different techniques to check.
Are you taking the levothyroxine well away from food, drinks (other than water), medicines and supplements? If not, something could be affecting your ability to absorb the levothyroxine. Indeed, are you taking any other medicines?
We cannot see if you are absorbing, and converting to T3, without Free T4 and Free T3 tests.
It is also possible your body is overproducing TSH - possibly something called a TSHoma. So that even when you have plenty of thyroid hormone, you are not reducing the TSH producing appropriately. If you had a perfectly functioning thyroid, that would end up making you hyperthyroid. But if your thyroid cannot respond, you would end up relying on your levothyroxine but still seeing a high TSH. That is the sort fo thing that needs a real thyroid expert to look at.
Dose close to test will give an elevated FT4 result.
But if all things are equal a dose of 200mcg T4 would be expected to show a low TSH.
Conversely, aTSH of 37 should ring alarm bells and initiate further investigations.
The pituitary gland may be faulty, it produces the TSH to stimulate the thyroid gland to produce more hormone....in theory with a TSH of 37 the thyroid would be pumping out excessive levels of hormone ...(high FT4 and FT3)...leaving you overmedicated.
But we don't know what your hormone levels are... i.e. FT4 and FT3
Your GP should be testing both T4 and T3 to establish this.
Do you know if you have Thyroid Autoimmune disease/ Hashi's
It seems that the hormone may not be passing from stomach to serum....but why?
Possibly low stomach acid, some drugs etc...
Do you have stomach pain or bloating?
Much serum T4 should convert to T3 in the tissues and that T3 should then be transported to the nuclei of the cells/ T3 receptors...and then do it's work throughout the body.
Your bone pain may be the result of low cellular hormone/T3.
Just a few ideas...but we really need to see the test/ results explained by SlowDragon.
You might be best to request a referral to an endo though medics thyroid knowledge tends to be limited
Low phosphate can be caused by primary hyperparathyroidism. PHPT. GP should be checking parathyroid and calcium levels. PHPT can cause bone and joint pain because calcium is being drawn out of the bones. Low phosphate in itself can give you symptoms
You can get a full thyroid blood test done privately and not that expensive. Look on line for Monitor My Health. Order a thyroid blood test TSH, T4 and T3. They’ll send you a pack. It’s finger prick blood collection. Send it off and within 2/3 days you’ll have a full result. Then post those results on here to get great feedback of what’s happening. TSH of 36 is very high. Mine was 37 when I was diagnosed. Similarly to yourself my GP was rubbish he just kept saying I had depression. How can severe joint pain be a symptom of depression I’d say. And the only thing making me unhappy was his lack of support for my health. Please get a private test and then follow advise from this forum. There are good private endocrinologists that can help you balance and manage your condition. It’s all about replacing the T4 and maybe T3 levels.
You might not be absorbing the tablets. You can request a trial on liquid levothyroxine as it absorbs so much better than tablet form . It’s more expensive than tablets but if you need it to bring your health back you need it. I take liquid levothyroxine it’s much better
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