Hypothyroidism - GP tomorrow, what to ask?

[GoneGirl1234]

I was diagnosed with hypothyroidism about 9 months ago. I've been taking thyroxine since diagnosis but GP hasn't found the right dose yet - lots of blood tests and changing my prescription in an endless cycle.

Over past 3 months I've been feeling much worse (close to how I felt before I was diagnosed - bone-crushing exhaustion, depression, trouble sleeping, nails that are flaking, muscle aches). I've got an appointment with my GP to discuss my latest blood test results tomorrow but I've also read so much about other things that can also come into play with hypothyroidism, such as B12 etc that I want to ask my GP to look beyond the thyroid blood tests and also test me for some of these other conditions.
My question is, to any other hypothyroidism suffers - what else should I be looking at?

Thank you in advance for any advice :)

The pituitary gland is what controls thyroid stimulating hormone, the pituitary gland controls the trap door.

In the case of auto immune disease it is the body attacking the pituitary gland ( body attacking itself) and telling it to be silly and open the door wide (hypo) or shut the door tight (hyper)

Although we think if the problem as a thyroid issue, it's really the pituitary gland that is playing up in a majority if cases and this effects the thyroid. Bit like the pituitary gland bullying the thyroid.

How did it go GoneGirl? Did you get the other blood tests booked in? If not you can always get blood tests done privately - it's about £100 for all the ones you'll need.

Thank you all SO MUCH for your support! I'm reading this thread on my lunch break and really glad no-one else is in the office because I'm getting all teary eyed.

After more cancellations and faffing around with GP practice, I finally saw a doctor yesterday to discuss. My TSH from blood test last Monday was 5.27, so even higher than before despite taking a higher dose. GP have now increased my dose to 50mg per day and I will retest again after 8 weeks.
The GP I saw this time was fantastic, I told her everything and showed her my list of tests, she agreed that all of those are reasonable and I'm going back on Thurs to have those done. She also added on a few tests to rule out any other conditions (specifically mentioned diabetes), and to test kidney and liver function.
She asked me to book in with her again once these blood tests are done to discuss this plus depression. She said that although it is a symptom of hypothyroidism she wants to make sure they are not just treating thyroid and ignoring depression.

I was a bit overwhelmed & tearful so forgot to ask for a print out of all my results, but I can get this when I go back on Thursday.

IvyKaty - I'm 34. I had hypothyroidism and endometriosis symptoms for approx 3 years and kept going back to my old GP surgery only to be told gems such as "all women have painful periods" or "everyone feels tired and gains weight as they get older" or (best yet) "I have other patients who are worse off than you that don't ask to see specialists".
The day I got my hypothyroidism diagnosis (which was only because I saw a locum who was shocked I hadn't had blood tests and ordered some), I went straight to register with my current GP's practice!

Yellow - thank you for all your advice. I've just ordered the book
It took me a long time to admit to myself that I'm actually unwell, not helped by old GP attitude & to lesser extent family who are a bit like "but you've got pills now, just take those and it'll be sorted out". My OH tries to be supportive but also has trouble understanding exactly how bad I feel now. I explained how depressed I am, partly due to weight gain, and his answer was for us to sign up for a Tough Mudder style race next year! I know he is just trying to help but this just feels like added pressure to not only get better but to get to some elite form of fitness. I am going to discuss with him soon, when I'm feeling a bit more resilient and not liable to keep bursting into tears.

I spoke to my boss yesterday and explained how hard I'm finding things, she was brilliant and has agreed to let me do 1 day a week working from home (I'm going to do Weds from home to help with mid-week exhaustion). I think that just being able to avoid my usual commute and spend the day working in my pjs will be really helpful.

Bobby & Kai - I think I will push for private endocrinologist referral in the new year. I'm lucky enough to have BUPA cover through work (although not sure what level cover we have), I will do some investigating this week on coverage. In meantime, I'll look at supplements etc.

BRILLIANT!

There's some good leaflets from the British thyroid foundation you can down load I think, or send off for (I know you get them if you join or go to a meeting) that might help explain to your DH.

You really do feel so unwell, my mum said to me she wouldn't understand if she herself hadn't experienced it herself (I was diagnosed at 20, she was in her 50s and 10 years after me)

Depression is a symptom (anxiety too as you don't like not being able to function) but perhaps wait till your tsh has been good and stable for a while. Sertraline for example can affect tsh and beta blockers might increase your need for thyroxine. I was on beta blockers for years but a slightly higher dose.

Well done OP -you should start to pick up now on the increased dose.
Try not to worry about exercise/weight for now; that'll all come together when your condition stabilises.
There is a lot of stuff on thyroid websites that advise swimming , yoga & Pilates are the best forms of exercise for those who have hypothyroidism.

Interestingly bobby those are the things that kept me at my fittest. I think keeping core and muscles strong is important as they become weak when either over or under.

I also used to do a lot of martial arts and some running - I can only really do these when I've been well for a while and have been doing the others for a while.

I found Forrest yoga v good as it focuses on a strong core and good hip/ leg work/ shoulders and machine Pilates very good (I'm quite hypermobile.)

Sorry to butt in on your post OP - but I recently had a blood test and my TSH was 3.2. Which apparently is "normal" and nothing to worry about according to my doctor...yet all of the posters on here who are on thyroxine are saying that it brings their levels down to 0.2-0.4 which is optimal. But I'm not eligible for thyroxine as my level is too low!

I just don't understand it!

If your thyroid doesn't work at all you do need a lower tsh - a normal thyroid makes t3 and t4. When it gives up the ghost, most people take only t4. And many need a higher amount as the body converts t4 into t 3.

However, that result is slightly raised. It would be better to know what the t4 and possibly t3 result is. I'd keep monitoring it and get tests early in the morning.

Make sure you are getting sources of iodine in your diet; milk yoghurt and oily fish and/ or take a multi vit with it in (ferroglobin has it and other multi bits esp conception ones)

Do you have family history? Do you have other auto immune issues? Do you have symptoms and what are they? Do you know vit D, ferritin and b12 levels? (These can cause similar symptoms to thyroid but also support the whole system.)