Last year I unilaterally upped my dose from 100mcg after feeling rubbish..basically after request to GP fell on deaf ears, I got extra levo and added 25mcg.. then 50mcg. I've been taking 150 MCG Levo for around 6 month and felt much better..a lot less comorbid symptoms.
Then changed GP and put 'put my hand up' to my action.
The GP went fair enough and upped my dose...it's a practice where random GPs call up..one of them OKed the extra since I felt fine on 150...then also booked me in for a test.
Just around New Year they tested me on my new dose and nothing was said..150 continued.
I then, on the back of talking to a colleague with hypothyroidism about feeling tired, (who said her GP did a vitamin test and her vit D was very low and received vit d prescription) thought maybe it's my vit D or ?.. asked for a vitamin test..actually got one! Vitamins all come back ok (slightly poor vit D). But then was told that the new year tsh test was 0.02....outside of range and best if I drop to 125mcg and I'd be tested 2 months hence...I was reticent but agreed (with proviso that if I felt worse on 125 there would be an option of increasing my dose back to 150..as I feel ok on 150) Was on 125 for a month and a half..with test in 2 months.
Didn't last 2 months ...muscle tiredness in limbs..plus my joints were aching so much..feet,knees,hips,elbows,wrists.. everywhere...the worst was fingers, especially my thumbs.
I went back to 150.. obviously I went back to 150..to see if it would change ..or whether something else had arrived(yet to have discussion with GP..who's name I took). Within a week the joint pains and muscle tiredness are subsiding (but I'm feeling fatigued and sleeping for England .. absolutely knocked out..why?)
I was fairly recently informed I have arthritis in my hip..thought it was bowel pain turns -out via x-ray it is apparently arthritis. Then realised all the other aches I have gradually obtained over the last decade may well be ditto.
It's all new to me but isn't arthritis a fairly frequent co morbid with hypothyroidism?
Feel much better on 150...even though I'm below tsh range..No hyper symptoms..no weigh loss no papitations no increased appetite no increased heart rate etc.
So my question is.. isn't measuring tsh a bit like hearing a fire alarm go off but not having a clue what kind of fire you're dealing with?..big?small?chemical?etc....and stick to my guns re. 150mcg...because the last thing I need is opening myself up to some comorbid auto immune arthritis...or whatever it is that knocked me for 6 on 125mcg.
I do feel a bit daft for asking...
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vivvov
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ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH and lowest Ft4
What were actual results and ranges on
Vitamin D
Folate
Ferritin
B12
Many people when adequately treated will have low or suppressed TSH. Most important results are ALWAYS Ft3 followed by Ft4. If Ft3 isn’t over range you’re not over medicated
There’s some research that says high Ft4 is to be avoided…so you might be better on slightly less levothyroxine
If Ft3 drops too low, then instead might need a little T3 prescribed alongside
Assuming 150mcg was a little too much levothyroxine, a more sensible reduction would have been to reduce to 137.5mcg twice week and 150mcg 5 days week.
Reducing dose levothyroxine by 25mcg was far too big a drop
Bloods should be retested 6-8 weeks after being on constant unchanging dose and unchanging brand of levothyroxine
Suggest you get FULL thyroid and vitamin testing done then
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 after dose reduction in levothyroxine
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 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
List of private testing options and money off codes
No your not daft as dosing and monitoring on an TSH seen in isolation is a total waste of time once on any form of thyroid hormone replacement.
Sadly in primary care this seems to be all that is done and why many of us resort to arranging own private blood tests in order to see how effective the T4 hormone is working for us.
T4 is inert and a storage hormone and needs to be converted by your body into T3 the active hormone which runs the body, much like the fuel that runs the car or central heating heating system.
T4 conversion into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, so we can something about this ourselves if our levels need building up.
Conversion can also be compromised, to a lesser extent by inflammation, depression, and any physiological stress ( emotional or physical ) dieting and ageing so whilst we can't stop time we can try and do something about some of these.
First step to finding out what is actually going on is arranging a full thyroid blood panel and if you go into Thyroid UK the charity who support this forum you will find a section detailing all the private companies offering blood test services.
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Hashimoto's and pain in muscles and joints
Joint pain since starting Levothyroxine 
Painful joints 
Joint pain 
Joint pain 
