Muscle weakness/pain thyroid related?

[Bustamove86]

Last summer, after my TSH reaches 17 and I was hospitalized, my muscles suddenly started to feel weak and I eventually started falling while walking then running. My endo thinks that since she raised my dose of Synthroid I should start feeling better soon, anyone have any experience with anything like this? Also have no thyroid since 2009 due to cancer. My TSH was normal in January then jumped to 7.42 in March then went back down to like .67 a month later (after raising my synthroid from 137 to 150. My t4 and t3 levels are still low so I’m on 175 synthroid and 5mcg cytomel twice a day now. Anyway, this has been getting so bad sometimes I can hardly walk. Also had bad blurry vision episodes which seem better now that I’m on the higher dose. Hoping my muscles will stop feeling like they’re on fire all the time soon😔

[shaws Administrator]

Let's face it - few endocrinologists or doctors seem to know how to treat patients who've had thyroid problems except to think that a TSH 'somewhere' in the range is fine.

No it ISN'T fine - fine is when we have a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the ranges.

As stated - all blood tests for thyroid hormones have to be the very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between your last combination dose and the test and take afterwards.

Research has shown that if someone is on a combination dose it should be on a 4:1 or 3:1 basisis (T4/T3). They should not adjust our doses to 'fit' the TSH into a range. Thyroid Stimulating Hormone (TSH) is not a thyroid hormone - it is from the pituitary gland and rises when our thyroid gland struggles.

When we take thyroid hormone replacements, either levo, liothyronine or NDT (natural dessicated thyroid hormones) the aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges.

All vitamins/minerals have also to be optimum, i.e. B12, Vit D, iron, ferritin and folate. GP should do these.

We, on this forum, support one another and all of our experiences together can add up to good or reasonably good health and some reach an optimum.

So, I think the first thing you have to do is make an arrangement to have a Full Blood Test. The earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards.

If GP or lab wont, there are some labs that do home pin-prick tests and if you decide to do this make sure you are well hydrated a couple of days before blood draw and that arms/hands are warm. Maybe GP will get the nurse to draw the blood for you to send off.

thyroiduk.org.uk/tuk/testin...

Just inform the doctor that the TSH is not a thyroid hormone but is from the pituitary gland and you need to know your Free T4 and Free T3. The aim is a TSH of 1 or lower with both frees in the upper part of the ranges.

[Bustamove86 in reply to shaws]

Thank you, I have had almost every test under the sun done. I’ll try to post my results, it’s a lot though. I have been forced to make this like my full time job until I find out what’s wrong.

[Bustamove86]

Here’s a little more background-I go to Memorial Sloan Kettering hospital in New York, and they show the normal range with all my lab results. For example, my white blood cell count was 1.9 k/mcL and the normal range is 4.0-11.0 k/mcL, so I’m really low and actually neutropeniC. Also in April my TSH was .18mIU/L, (and the normal range is .60-4.80); my free t4 was .73ng/dL (normal range is .70-1.50) and my free t3 was 70 ng/dL (normal range is 90-168). In March my TSH was .31, free t4 was.67, and free t3 was 51. But in February my TSH was 7.4, so it’s bee fluctuating pretty badly. They increased my synthroid after the March results and then again after the April results and am currently taking 175. Also had a pituitary MRI and was checked for Cushings but it was negative 😑