General Thyroid Whinge

hose1975

Hi all,

I've had an underactive thyroid since I was 19; I'm now 38. Which is to say, I know when something's wrong and I know what's normal for me (I function best with TSH pretty much suppressed, around 0.05 and free T4 around 19 or so).

Over the last few months I've started putting on weight again although not through what I'm eating, I'm certain of that. I've gained over 7 lbs in under six months. For someone who controls themselves pretty well this is rather galling. I'm also finding it harder to exercise and I'm feeling very tired. In short, my thryroid's f*cked again. I've had two blood tests in the last month or so: the first showed TSH at 0.19 (so an almost four-fold increase from before) and free T4 was 16. Told to repeat test three weeks later. Those scores are now in: TSH at 0.23, free T4 at 14.7. Told to repeat the test again in three weeks. I can see a pattern here...

I feel like crap, but because my results are 'borderline' by the official definition, I can't get anyone to help me. My usual GP didn't order this test in the first place so it's unlikely that she's asked for it to be repeated; she's pretty good at knowing at what levels I best operate. But she's hella busy and I can't see her until 4 July! I'm not convinced any other GP would look beyond the numbers so I'm kind of stuck. I really don't want to have to buy a new, temporary wardrobe to accommodate my increasing girth in the interim.

Sorry, not really looking for advice, just looking to offload. Does anybody else operate best with high free T4 and really low / suppressed TSH? From the way I feel, you'd think my TSH result would be over 5 and free T4 under 10!

Thanks

Jo

Fuzzipeg

You have my commiserations.

I have a teeny tiny wonder, have they never looked at your t3? I think these are "made" from t4 naturally, and are the real work horse of the "family" might it be just possible this change is not happening or happening as it used to.

I hope something happens to help you feel better soon. As it is I admire you for being yourself at the number you first mention. My numbers are very different and I've been done in.

hose1975

Thanks, Fuzzipeg.

I'm not sure what rationale I could employ to get my T3 tested, as it's not routinely done here in the UK (don't know where you are); I think I'd need to be able to deploy some pretty fearsome arguments in order to achieve that!

I don't know why I feel so much better (without exhibiting symptoms of being hyper) when my numbers run high, I just do. At the moment I have all the mental acuity of a teaspoon. Despite this, despite the dog-tiredness, despite the creeping lardiness, I can just about muster enough energy to keep going on my C25k programme. If I don't I fear that I'll 1) balloon, and 2) lose all will to exercise. I gots to keep going!

Best wishes

Jo

survivor1952

I understand your frustration. Please, if possible, shop for a GOOD endochronologist. Ask around, call around, do checks on the internet...a good endo will listen to your symptoms & not just rely on blood work numbers. My numbers can be spot on but I will complain about tiredness, coldness, weight gain, etc and my endo listens. I see on posts all the time people going strictly by their test results but sometimes the numbers can be good but the old thyroid still needs adjusted.
I lucked out, my GP actually recommended my endo, she said she was not an expert on thyroid issues & wanted me seen by someone with more knowledge to help me. I wish for you that you can find a good one. Not all treat symptoms, some only judge the numbers. Good luck & add me as a friend if you like.

Syriene

yup, and REVERSE T3 as well and also your adrenals. If you could find someone willing to do the whole list of tests, you might get a clearer picture of what is going on.
I tend to do better with a very low TSH as well, but I found someone willing to treat by how I feel rather than by the numbers. I hope that for you too.

You can check here for a list of recommended tests

http://www.stopthethyroidmadness.com/recommended-labwork/

almost forgot, here is a good site to check for doctors in your area. they are patient recommended.
http://www.thyroidchange.org/list-of-doctors.html

steviecooke1985

I used to be at an NHS walk-in/GP surgery in Brighton and they always included T3 in the usual thyroid test - but since coming to London no one seems to do it? I'm going to push for a t3 test next time I have mine done...we'll see. I'm not hopeful!

Fuzzipeg

I am in the UK too.

I agree the "Stop the thyroid Madness" site is very good for information but all the links are US orientated. Here in the UK we can only look on enviously at the rest of the world as they look into conditions more deeply and sometimes treat to symptoms. I fear I could get political, not party.

I think the UK Thyroid support site provides a proforma letter which can be used to push for better treatment. I do not remember whereabouts I found it, under which heading and sub topic. I might be looking to print it off for myself If I draw a blank on Monday.

Facebook may also have groups on there trying to improve things over here, something I heard from someone helpful and we all need those.

editorgrrl

US endocrinologists are mostly anti-Cytomel & anti-Armour.

The human body is supposed to convert T4 to T3, but not everybody's can.

Over the last few months I've started putting on weight again although not through what I'm eating, I'm certain of that. I've gained over 7 lbs in under six months. For someone who controls themselves pretty well this is rather galling.

According to your diary, you're not weighing all your food (everything—even packaged foods) and measuring all liquids with calories. Logging everything you eat & drink accurately & honestly will ensure you're actually eating at a deficit.

Have you read the Sexypants post? http://www.myfitnesspal.com/topics/show/1080242-a-guide-to-get-you-started-on-your-path-to-sexypants

hose1975

According to your diary, you're not weighing all your food (everything—even packaged foods) and measuring all liquids with calories.

I can guarantee you that everything is either weighed or follows the manufacturer's 'per item' calorie information. All servings of homemade foods are standardised. I am not doing anything different to when I was losing weight before and am (ever so slightly) insulted that you think I'm doing a half-arsed job! Which bits of my diary in particular were you thinking of?

editorgrrl

The actual weight of packaged food can vary dramatically.

I'm so sorry you were insulted—that wasn't my intention at all. I was only trying to share what worked for me. I thought I was stuck for no good reason &/or my Hashimoto's, but once I tightened up my logging I started losing again. (The room for error gets smaller as you lose.)

Everybody's different, and weight loss takes a whole lot of trial & error to find what works for you. Not weighing your packaged food isn't working for you, so I suggest you start weighing it.

Fit_Natasha

Hi, Hose1975! I looked at your diary. If you are not feeling well and the doctor's appointment is far away, try to do this at least for a week, or if you can, longer: remove all gluten, dairy (no cheese, no skim milk in your coffee), pre-packaged food, alcohol and see if you will feel better. I see that everyday you have something that may irritate your guts and slows the conversion of T4 to T3 (or is it opposite? I don't remember). Those foods have tendency to irritate your guts where the 80% of conversion occurs. Definitely no sugars, no brownies . I can almost guarantee you will start to feel better in a week. You can re-introduce those foods later after your blood work stable, one by one. Good luck and feel better!

LAT1963

The grass is always greener on the other side of the fence.

Healthcare in the US is only good if you have oodles of money to pay for it. The knowledge and the care exists, but you have to fight so much to access it and to get your insurance (who are not doctors) to authorize paying for it, that it's often like having no care at all.

I could rant on this topic for pages but, threadjack, so...

It would be medically appropriate for them to test TSH, T3, T4, rT3, and cortisol. Also cholesterol and triglycerides, which can rise as a side effect of hypothyroidism, so they are indirect indicators. They might also test for some other pituitary hormones.

Try looking up and printing out the UK health services guidelines for docs treating thyroid diseases, and read them and bring them to the next appointment. You'll need to focus on the exceptions.

It sounds like you may have the kinds of antibodies that can interfere with the accuracy of thyroid tests. Ask to be tested for those.

Write down your agenda that you want to accomplish at the visit before you go. Otherwise brain-fog might make you forget something or allow the doc to mislead you onto another agenda/hijack your visit.