Finally some progress..

[Camsmum13]

I finally managed to convince my gp to refer me to an endo a couple of days ago. Hes given me a choose and book sheet, so i get to pick where i go. Does anybody see an endo in the Leeds, west yorks area thats any good?😊

[Marz]

I notice you are a new member. What are you hoping to achieve by seeing an Endo ? From reading this forum for years it would seem that most of them are diabetes experts and know little about thyroids. You could of course strike lucky !

I would ask questions here first if I had a problem that the GP was unable to solve 😊

[Camsmum13 in reply to Marz]

Hi Marz. I was diagnosed with an underactive thyroid just over 3 years ago after being really ill. When i went to see my gp, he said, ah, i think i know whats wrong with you, youve had it a while but now we have to start treating it. Lets do some bloods to make sure' then i was diagnosed with an underactive thyroid. He said my antibodies were 'sky high', at the time i had no idea what he was on about. I was started on 25mcg of levo, having bloods done every 3 months to find the right level. They go up slowly, and currently im on 100mcg one day, 75mcg alternate days in between. In over three years, ive never felt well, constant tiredness to extreme exhaustion and every level in between. Ive gained 3 stone in weight, despite no change in diet or exercise. Pains in bones and joints, anxiety and depression completely out of the blue, no energy. If i have a busy day im completely shattered for a few days. I can sleep for 6 hours or 14, makes no difference. Recent bloods show my liver was underperforming, ive never been a drinker. After reading up on thyroid issues, ive come to the conclusion that my body isnt converting the levo to t3. The symptoms above are just a few. Its a neverending nightmare.

[Marz in reply to Camsmum13]

Your story is the same as many here. It may be better for you to see a Private Endo/Doc who is Thyroid friendly. Louise Roberts is one of the Admins here and she can provide you with a list.

You msy also nrrd privste blood tests to establish if you have a conversion issue. Labs rarely test T3 and that is the result you need. Go to thyroiduk.org and clicj onto Private Testing - several companies do home testing kits. Well used on this forum.

Always obtain copies of all your results so you can monitor your progress - they are legally yours.

B12 - Folate - Ferritin - VitD also need to be optimal for thyroid hormones to work well and for you to feel well. Are you taking any other meds ?

[Camsmum13 in reply to Marz]

I wish i could afford a private Endo/doc! Have had several courses of folic acid due to folate deficiency, and am on permanent vit d 800iu daily due to deficiencies every time i stop taking it for a while. Will look at the blood tests though, they never test for t4 or t3. My tsh at last test two weeks ago was 0.98 range 0.2 - 4.2. Full blood count done, all ok.

[humanbean in reply to Camsmum13]

I was started on 25mcg of levo, having bloods done every 3 months to find the right level.

That's one of the reasons you've been suffering.

Raising dose should not be done quickly, but on the other hand doctors do it far too slowly. Testing needs to be done every 6 weeks, and then dose can be raised if test results show this is necessary. Waiting for three months between each test is sadistic and unnecessary. Eventually, when levels have stabilised it shouldn't be necessary to test more than a couple of times a year, or even once a year - it really depends on how well you feel.

Another issue is that, unless you are over 50 and/or have a heart problem you could have been started on a dose of 50mcg a day, or even 75mcg per day, which would also have cut down the time to get up to a sensible dose.

[SlowDragon Administrator]

You have high antibodies, so you have Hashimoto's. The majority of us with Hashimoto's need to try strictly gluten free diet. Approx 80-90% find it gives significant benefit.

Leaky gut and gluten intolerance trash vitamins

Hashimoto's affects the gut, or more likely leaky cut is the trigger to start Hashimoto's. So you need to look at helping gut repair. Probiotic daily, bone broth and getting vitamins at good levels can all help

See TheThyroid Pharmacist website for info on Hashimoto's

Still suggest you email Louise, there may be recommended NHS thyroid specialists near you on the list. [e-mail]