Newbie - Advice please!

[Pawnstarr]

Hi all,

I would very much appreciate some advice & opinions. I have been feeling unwell for some time with a variety of symptoms all of which I now feel could be thyroid related, having read up on it a little but I worry that I am being paranoid as googling health issues tends to make you!

I originally went to my doctors primarily for back/neck/shoulder pain but I also felt terrible tiredness & generally unwell. I was referred for Physio & after a number of unsuccessful sessions referred back to my GP to get blood tests to check for any underlying issues such as rheumatoid arthritis. No rheumatoid factor was found but it did throw up really low Vit D levels, elevated TSH (I didn't get a copy of the results but from memory I believe it was around 7.5) and T4 just within normal range.

I was put on high dosage Vit D tablets & told to come back for another blood test in 3 months. After a couple of months they took me off Vit D although they never did another Vit D test. The second blood test showed a TSH level of 5.12 mu/L (0.35-5.5) and free T4 level of 13.0 pmol/L (10.3-22.7) - no further action required.

Meanwhile I was also referred by the Physio for Clinical Assessment & sent for an X-ray. They found a mild scoliosis & arthritis in my neck. None of the Physio has helped so far & whilst I possibly felt marginally less tired whilst taking the massive doses of Vit D, I am now back to square one in pain & so very tired all the time.

There are many other symptoms I hadn't given much of a second thought to until I started reading up on hypothyroidism... My hair is thinning at my temples which is now getting difficult to cover, I'm often cold when everyone else seems fine, I often fall asleep when I get home from work, I feel hungover (tired & foggy) most of the time despite rarely drinking, glands in my neck (under my ear) are tender & I sometimes get a weird clicking in my neck when I yawn/swallow and I think I have IBS symptoms too to name but a few. I feel like I am 36 going on 80 and going mad with it. I have all but given up every activity I used to do, I never have the energy, it's all I can do to keep on top of work tbh & I've already gone down to 4 days.

I have a doctors appointment Wed but I'm not sure what to say, I always leave feeling like they think I'm being a hypochondriac. From what I've read these levels are borderline, could my thyroid be responsible?

All thoughts and advice welcome... Thanks.

[Happy-go-lucky]

Hey there it sounds like a low thyriod to me. I got diagnosed in December and started on levothyroxine 25 mcg then it went up to 50mcg but I still feel tired, get that off balance like hang over feeling, I was yawning all the time but that's stopped now, just in general feel like poop. But it's not everyday. Oh forgot to mention sinus and ear problems. The list is endless. You get used to it tho. Hope this helped

[Pawnstarr in reply to Happy-go-lucky]

Oh lord, I had a bout of sinus problems early this year... My nose would suddenly block up every evening for several weeks. Oh lord, another symptom I hadn't considered lol!

[Hidden]

Your story is a mirror image of mine. It's taken me three years to get a trial on thyroxine but my gp still thinks it's all in my mind or stress related.

They just don't want to know when it comes to thyroid issues. My TSH was 6.5 last check and I've been on 25mg of Levo for six weeks, I have a follow up blood test today and if it's reduced he's going to take me off it despite the fact I still have loads of symptoms. I'm moving doctors if I don't get the correct treatment.

Don't give up keep pushing.

Chris

[rosetrees in reply to Hidden]

Err what?? Which med school did your doctor go to? If administering thyroxine reduces your TSH, the very thing it's meant to do, he'll take you off it?

What on earth would s/he do if it raised your TSH. On second thoughts, don't answer that. Change doctors quickly. You need more than 25mcg and you need to reduce your TSH to 1 or less.

[Hidden in reply to rosetrees]

I am confused as you are about this, I have my blood test later this morning, I haven't taken any levo for 48 hours and boy do I feel bad, I probably shouldn't have skipped it but its got me this way as I can't risk the test giving him any reason to stop my treatment.

[rosetrees in reply to Hidden]

If it's any help, I was initially put on thyroxine after I totally lost it with a GP (not my regular one). His only suggestion was a retest in 3 months. I was horizontal in bed, feeling like death, every inch of me was shaking. I said to him "what possible harm could it do to try the treatment and see if it worked". Then I lost it.

He put me on thyroxine to shut me up.

My regular GP returned a few weeks later, tried to argue that as my TSH had reduced to 2.5 I didn't need to do anything more, and then gave in the instant I said I still felt awful could I raise.

Don't panic if your GP won't help. PM me and I will share some thought on things you could try and doctors you can see who will help you.

[Hidden in reply to rosetrees]

I am going to ask for the following tests this morning, I bet you they refuse to do any but the TSH.

TSH (thyroid stimulating hormone), Free T4, Free T3, iron, folate, ferritin, Vit B12 and Vit D.

[rosetrees in reply to Hidden]

My doctor had to phone the lab and put in a special request for the FT3 as they refused to do it the first time he asked. My regular GP does at least listen to me. He isn't pro-active, but if I ask for something he will consider it. I assume that is because, if challenged, he can say "the patient requested it", rather being accused of ordering things that are outside the dreaded guidelines.

[silverfox7]

You really need some thyroid treatment. Have a look in the thyroid UK site, there is a list of symptoms. You already tick quite a few and may be you will be reminded of other problems you may have. I'd take this list and show it your GP! at least I would want a trial but many will try to ignore you. Also insist on another Vit D test. It may not have solved the problem, many need to supplement for life, its not a quick fix. Always ask for a printout of your results, they can't refuse, and post them on here with the ranges-important as they can differ from lab to lab, and you will get loads of advice as to what to do next. As you already have an appointment though give him the list and ask for a trial. If he plays ball let us know what he is giving you and any instructions he has given. sometimes not giving you enough is worse than not giving you any! Loads of help out here so keep us in the picture. Hope appointment goes well.

[Clutter]

Pawnstarr, make sure your next thyroid blood draw is early in the morning when TSH is highest and it may tip you over the top of the range for a diagnosis. The following will help you discuss your symptoms with your GP.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/diagno...

[greygoose]

Pawnstarr, paranoia is a symptom of hypo.

Hugs, Grey

[astroscopesuk]

Dear Pawnstar

sounds like under active thyroid to me too,mind you I'm very new to all this as i was only diagnosed in April,

and i felt so dreadful,, i couldn't work. I was falling asleep at work and that's just bad news,,I empathise , there are some really knowledgeable helpful earth angels here ,so you have come to the right place, i found the gps really don't know an awful lot about the thyroid and its a battle to get the right pills to make one feel healthy again,, I hope you don't have these struggles , but if you hang about this site I'm sure you will get the help you're seeking, hang in there,

all the best.. its taken me three months and lots of info from people on this site, and the lazy gps ask me what i want,, this site is so informative the gps are learning from it ,, lol

Hope you feel better soon

kind regards

ASTRO

[Pawnstarr]

Wow... Thank you all so much for taking the time to reply, your kind words and support. I am almost having a little cry just to know that I'm not going completely mad & that there are others out there that understand. Silly mare!

I will print off the list of symptoms & tick off the ones that apply... Great idea! It has been about 4 months since the last test so I will insist on another one including vitamin D & see what happens I guess... I'll keep you posted & no doubt be back to ask for more advice!

Thanks again everyone x

[Pawnstarr]

Argh... Well that made me very very angry! Doctor wasn't interested in even acknowledging my list... He just kept telling me that my last test was "normal" & only three months ago

- well yes, and three months before that it showed an elevated TSH. He refused to concede that if it can come down from 7.5 to 5.12 in three months that equally it could go back up?! WTF?

He finally agreed to order tests for Thyroid function, Iron, Vit D and Corisol - I don't know what that one does?!

His best solution if nothing came back abnormal... See another doctor. Great!