new - need help

[ShelWhitt]

Sorry if this is longwinded. Have been hypothyroid over 35 years and functioned pretty well until after hysterectomy in 1989. (I think this in retrospect). Started being not well with back pain/head and l had to leave work in 1994. Put it all down to wear and tear. All this time on levothyroxine. Never thought to question thyroid at all and dosage remained pretty much the same all this time. By 2009 was getting worse and suffering with head, neck and shoulder pain quite badly. Tried Physio, hypnotherapy, acupuncture, painkillers, you name it no joy, so paid to see a rheumatologist. Long story short , had me on steroids for a year (polymyalgia). Then took me off them. Said no. It was fibromyalgia. Referred me back to GP. All this time I was only being tested annually for my thyroid. which they said remained pretty much stable. Health gradually gone downhill since then. No medication works, and side effects made me even worse. Am now stuck with fibromyalgia label, plus anxiety. Can't get past it. I am now feeling convinced I have been on the wrong track all along and it is all to do with my thyroid; as for the last two years, I have been tested every six weeks and dosages have been changed several times. My health meantime is going down the pan big time. I feel really dreadful, not just pain, all sorts of other issues as well. Digestive. Neurological. Optical. Sleep. and could go on. Trouble is I have never made the link or ever asked for any thyroid blood results or thought to question the docs until recently. I now think what has been diagnosed as fibromyalgia could actually be a misdiagnosis and it is all to do with my thyroid. Have been reading up and wondering about T4 conversion to T3. Seeing the doc on Friday and am going to ask questions. Can anyone relate to a similar situation or offer any advice. Even knowing what to look for if I manage to get hold of results would be helpful, as I have no idea. Thanks in advance.

[Marz]

You have certainly come to the right place to learn more about your thyroid.

I have read your posts on the Fibro Forum but I was not able to respond as I have been 'restricted' since last June for trying to help people have the correct thyroid tests.

Your first task is to obtain all your thyroid test results with ranges - they are legally yours and you do not have to give a reason. Often just the TSH is tested which is a Pituitary hormone and not enough to define thyroid Activity. As you now know you need FT4 FT3 tested and rarely done in the NHS. Also testing anti-bodies TPO & Tg to rule out Hashimotos is important

Private Home Testing available through Thyroid UK - click onto - About Testing in the link below.

thyroiduk.org

Also test B12 - Folate - Ferritin - VitD as they are often low and good levels needed to aid T4 to T3 conversion.

You are on the right track - I was diagnosed with Fibro in 2000 and Hashimotos in 2005.

Happy to help ...🤔

[ShelWhitt in reply to Marz]

Thank you so much. You really have been very helpful, so I feel bad asking more, but if it is not too much trouble , I would really appreciate it if you could tell me what the 'normal' readings and ranges are I should be looking for, if I manage to get the latest results. Thanks again.

[ShelWhitt in reply to Marz]

All I know at the moment is that I am on 50mcgs and 75 mcgs levothyroxine on alternate days, which is a lot lower than I used to be on.

[Marz in reply to ShelWhitt]

Ranges vary from lab to lab. Your TSH is good around 1 or under. FT4 & FT3 are good in the upper part of the range.

B12 good at 500+ - Folate and Ferritin good mid-range - VitD good around 100+

Your dose is very low. Why was your dose reduced ? Docs obsessed with the TSH and have little or no knowledge of how the Thyroid works.

Ring the surgery and ask for your results and say you will be along in a few days to collect. Also check on-line access at your surgery.

[ShelWhitt in reply to Marz]

Don't know why it was changed, I have just accepted they knew what they were doing. Seeing my doc on Frid am. Not convinced they know much about Thyroid problems. Will ask and see what happens. Thanks again.

[Marz in reply to ShelWhitt]

Best to ask Receptionist for copies of your results with ranges - no need to involve GP. Do let us know what happens - ensure you have a clear plan of your expectations.

Never accept a dose change without seeing your results. Your body and even a small dose change can mess with your body.