I hope someone can give an advice or share their experience.
Currently on 150 mcg Levo I’m still not feeling as my normal self. Since I’m still feeling tired and drowsy as well as my all body aches every day all the time, my endo suggested she can refer me to a rheumatologist. Due to the hormone levels she says it looks like my persistent symptoms are not related to thyroid and there is nothing she can do thyroid-wise.
Yes, it is possible that I may have another disease that gives me those symptoms. My concern is whether it is worth going to rheumatologists. Does anyone have experience with rheumatologists? Are they helpful or are they the same sort as most GPs and endos?
My latest blood results (Feb 2021)
TSH <0.05 [0.27 – 4.20]
FT4 20.5 [12.00-22.00]
FT3 5.0 [3.1 – 6.8]
ATPO when diagnosed in 2017 >1300
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Tginger
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Not having ever seen a rheumatologist myself, I can't say if it would be helpful or not.
However, your TPO antibodies were extremely high when tested and I assume you know that you have Hashimoto's and this can, of course, cause fluctuations of symptoms.
As Hashi's can cause gut and absorption problems leading to low vitamin levels and deficiencies, have you had these tested recently? Low levels bring their own symptoms. You need to test
Vit D
B12
Folate
Ferritin
What thyroid hormone replacement do you take and when did you take last dose before the test?
With your FT4 85% through range and your FT3 only 51% through range, you might find a better balance helpful, i.e. both in the upper part of their ranges.
I haven't checked my vitamin levels for quite a while. So, it is worth having a test. Last tested in May 2020:
Vit D 116 [50-175] -- I supplement 3,000 ui/day
B12 103 [>37.5]
Folate 9.99 [>3.89]
Ferritin 101 [13-150]
I'm on a quite good diet, so usually don't have problems with vitamin levels apart from Vit D. I'm also on gluten free.
I always test 24 hr after taking my last dose of Levo, in the morning on empty stomach.
I keep track of my medication and symptoms and I felt best when my FT3 was around 6-6.7. This was back in spring 2019 but since then we somehow have lost that balance and even with liothyronine supplementation couldn't get back to these levels.
The endo put me back on levo only. I'm on 150 mcg levo now and she said she can't increase the dose any more. I'm thankful that we've got to 150 mcg with her because all previous endos I saw we men (I don't mean to be sexist!) and they were very rude to me and wouldn't give me more than 100 mcg levo (not to mention lio).
I think from what you've said and your current results you are missing your T3 and need it back and work on optimising your FT3 level.
It's worth retesting your vitamins, even though they were good last year something may have changed. I retest once a year privately, and Vit D twice a year as recommended when supplementing.
Had my vitamins last tested in May 2020 so it's time for another test :). I'm only supplementing Vit D as I spend most of my time inside and don't get enough sunshine.
I wish I could do a test for coeliac. Unfortunately, gluten makes me that sick that I wouldn't be able to survive on a gluten diet for 3-6 months. I had a coeliac test few years ago but the GP didn't tell me that I needed to be on a gluten diet for so many weeks or months. Before the test, I managed to eat one slice of rye bread a day for 4 weeks (these were 4 weeks of suffering). The result was Ig A level 3.8 [0.7-4.0]. So, quite close to being diagnosed but not enough :). I won't be able to find if this result could have been higher :).
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT.....If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
I doubt she will now agree to put me back on T3 because she has just taken me off and believes it is not making any difference to my health.
This is one of the reasons I was thinking about agreeing to being referred to a rhematologist, hoping they will know more about thyroid and related conditions.
I can identify with all that you say. Endos don't seem to recognise the long-lasting and ongoing symptoms of thyroid problems. In my experience they recognise the few symptoms on their list and once bloods are in the normal range for a while, say that ongoing symptoms are not thyroid.
For me I would say that ongoing symptoms are because your FT4 and Ft3 are not balanced the way your individual body needs them. Personally I would need a lower FT4 and a higher FT3.
Yes, based on my tracked levels and symptoms, I agree that I would need a lower FT4 and higher FT3. Unfortunately, this is a difficult task when you get no support from doctors
I have seen a rheumatologist however that was further to a specific problem I had had for decades.
One constantly swollen and painful ankle with varicosity. He finally diagnosed gout, it wasn’t as painful as odd bouts of gout I had previously had in my right foot. However he was persistent in seeking out my problem and whilst I have a slightly deformed ankle the swelling in minimal and pain zero five years post his diagnosis. In his deliberations he regularly commented that perhaps other factors, not least my thyroid treatment may need revisited. Sadly his answer although helpful ruled out any consideration that my thyroid was struggling despite 500mcg of levo.
I may have been lucky as I had a specific issue but in your shoes not sure which way I would go.
I’ve had similar issues, really bad muscle and joint pain and it helped me to split my Levothyroxine dose to twice a day, no more muscle or joint pain.
I had the exact same experience. I had one 45 min appointment. Told I had fibromyalgia and hypermobility syndrome. Routine bloods already done at GP so no further tests just told and diagnosed with the above. I didnt prepare for the appointment because I thought that the professionals know best. Now I would be asking for more tests and going prepared.
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Is it cfs?? 
T3 only worth another PROPER go? 
Help with getting a diagnosis
Please let me know what you think of my endo re: Symptoms and Vitamin D
