Help please-Stop and Shock Didn't Work

[Gillypop]

I have been battling with my GP for 5 years with my Thyroid problems. In 2009 endocrinologist put me on Carbimazole and gave me Thyroxine, only to stop it all after 12 months - I was told it was the Stop & Shock treatment to get my Thyroid working properly again. I have annual tests since all around the 3.9 mark but have felt ill ever since. The last 5 months has been crippling for me and doctor now saying I have Fybromyalgia as well as Osteo Arthritis, Tiredness, Joint Pain, Hair Loss, Weight Gain, Dry Skin. I really think its my Thyroid but Doc keeps saying that tests normal. Please help I am at my wits end with all this.

[Jacquid]

Hi Gillypop, sounds similar to my story. Block and replace for 18 months then nothing. I'm slowly realizing I may have been under-medicated for about 5 years, all this time I've been back and forth to hospital and GP saying I'm not well. Have been offered anti depressants and a CFS diagnosis.....self medicating out of desperation at the moment.

I'm no expert but the lovely people here will ask for your exact numbers, all of them with their reference ranges, so get back to the GP and get them, you have a legal right to them.

You've come to the right place for help.

[Gillypop]

Sounds the familiar!! I have an awful feeling its down to NHS cutbacks and easier/cheaper to label with another name. Trying to tell my CFS and Fybro, haven't worked since Sept and now considering trying for PIP, how on earth can this be cheaper!!? Only numbers I have is TSH levels in year 2010 3.9, 2011 2.6, 2012 3.9, 2013 3.9, 2014 3.8, today 3.3 all range 0.35 - 4.5 whatever that means.

I am just so tired of feeling like this. Thanks for replying

[Jacquid in reply to Gillypop]

Those levels look too high and are not much use without FT4 and FT3, those are the ones that tell you what is really going on. If your area is like mine the labs will not do FT4 or FT3 even for a GP if the TSH is what they call in 'range'. That 'range' can differ area to area quite dramatically.

I spent a year trying to get FT4 and FT3 from the GP and it was only when I asked to be referred back to the hospital that I finally got them and they are very low and have been since my initial treatment. Your endo will have those numbers from when you were being treated at the hospital.

[Jacquid]

Btw the stop and shock probably did work....too well! If it's Graves disease you have the thyroid can end up under-active eventually, I think that is what has happened to me.

[Gillypop]

Yes you have hit the nail on the head. It was Graves I had, but to be honest they couldn't quite ever work me out because they said my levels kept going to extremes one end of scale to the other. Its so good to know someone knows what I'm talking about, GP's I have seen just seem to look at me like I'm mad and making things up. You have made more sense in an hour than Docs have made in 6 years. Thanks so much.

I will see if they will test my FT3 & FT4, but I really don't hold out much hope. They are trying to put me on Pregablin, but I have been fighting it for last 3 appointments(weeks), think they may say I am making up excuses again. I feel like I am back at school when at the Docs, quiver like a frightened little schoolgirl, worried I will make myself look stupid. Rediculous I know!!!

[Jacquid]

I know, we think docs know best, but what I have found out is they don't, not even some of the endos. Ask to be referred back to the hospital, they will do the full thyroid test there. You can also get the tests done privately at Genova and Blue Horizon if they really won't play. This is what I will be doing to keep check of my self medication! Expensive but health is more important.......

Start reading some of the posts and advice here, that's how I educated myself, you can search specific topics too. Vitamin and mineral levels have to be good too for your body to utilize hormones and you can ask the GP to run those tests.

Have a look at stopthethyroidmadness.com/ which gives brilliant advice too.

[Jacquid]

Just looked up Pregablin, for anxiety? That can be a hypo symptom, have a look at

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

[Gillypop]

Pregalin is for the joint ache I'm getting.

[Gillypop]

I so wish I had results, I have been so stupid and trusted the doctors with my life , literally. I thought they knew what they were talking about and I could trust them, now I just feel lied to. Think I will struggle to get results I need.

Blood tests privately with Blue Horizon - guess what, that's based at my GP surgery. What on earth is going on?

[Gillypop]

Thanks by the way to both of you.

[monkey65]

Just a small thought that could help with the docs. I always take someone with me, though not hubby, he gets too angry. I also write every thing down, get the list out and go through it. Not sure the GP likes it but I am much less flustered that way. Good luck.

[Gillypop]

Yes planning to take Hubby with me, can't get Doc of choice for over 2 weeks though but think he's worth the wait, or at least I hope so. Exhausted 5 docs in practice already so have to try someone different, hoping he may be the key I am looking for.