Back, with more questions and total confusion about new test results.

[southernbee]

I posted about a month back that my TSH results were 3.31 but my Doc told me I was fine and not hypo despite my symptoms and family history. It was suggested here that I try a private doctor if I could afford to which, whilst I could just afford to, since my finances are tight and I have BUPA I decided I'd go back to my GP practice to see if they'd refer me (BUPA might pay if I have a referral). I saw a different GP from the one who dismissed me so condescendingly last time. The new GP listened to all my symptoms, told me my current tests were normal but she would test me again and if they were still normal give me a referral. So we did the test (TSH and free T4 both times) and my results have thoroughly confused me as my both my TSH and T4 have dropped. To be clear I'll put up my previous ones from January and the ones last week:

31/01/2013

TSH: 3.31 (0.5-5.56 lab range)

Free T4: 12.1 (7.5-21 lab range)

30/07/2013

TSH: 1.98 (0.5 - 5.56 lab range)

Free T4: 9.10 (7.5-21 lab range)

I saw the new GP this morning and she says judging by these two tests I absolutely do not have hypothyroidism. She had nothing to say about my symptoms just to keep an eye on them, even though I had a dermatologist immediately notice my thinning hair and book me in with an NHS hair specialist, appointment in September, and she herself weighed me and saw I have not lost weight in 6 months even though I eat approx 1500 - 1800 cal per day of a low carb diet and do crossfit/personal training 3x a week. I think she thinks I'm depressed and has indicated she wants to put me on anti-depressants which I'm resisting because I don't think I have clinical depression.

Basically, the consensus before on this board, when I asked, was that I had hypothyroidism based on my TSH levels (which was such a relief!). But now it has dropped (with no meds) does that mean I actually don't have it?

I finally managed to get this GP to give me the referral (like drawing teeth!) though she said because it was an inquiry not a recommendation, BUPA would probably not pay. I don't want to spend £200-£300 if not necessary so with these results should I still go private? Or should I wait another 6 months to test again? (are TSH fluctuations like this common?) Also, should I get tested for Hashimoto's? My mother has hypothyroidism and I have coeliac, which I know puts me at a higher risk. Or should I test my B12 levels instead as I have coeliac?

I'm so sorry to ask so many questions and come across as a bit unhinged but I'm thoroughly confused now and it's so difficult to figure out what to do next! Aside from worrying about my health in general, I'm 32 and my partner and I would like to try for a baby in the next few years, I'm scared my fertility could be negatively affected if this is ignored.

Any advice would be appreciated. Even if it's telling me the GP was right and I should calm down

[Clarebear]

Unfortunately TSH is a really bad diagnostic test for hypothyroidism, but doctors do not realise this. Your fT4 looks low and may well go below range if you carry on without treatment. Ft4 and fT3 levels give a much better idea, although they are not perfect either. Yes I think getting your antibodies tested wold be a good idea too, although negative antibodies won mean that you don't hypothyroidism (my antibodies were negative), but a positive test would b som more ammunition for you.

TSH does fluctuate throughout the day, being highest in the earl hours and lowest in the afternoon. Did you have your tests done at the Sam time of day each time?

You most definitely are not unhinged and probably do have hypothyroidism I would think.

Have you go the list of endos from Louise? You do need to be very careful who you see as some endos are no better than GPs in their understanding of the thyroid. Xxx

[southernbee in reply to Clarebear]

Thank you Clarebear for your reassurance on all fronts. And dealing with GPs is sure making me feel unhinged :).

I got my blood tests done approximately at the same time of day (about 10am for the first one and 11:30am for the second). The first one was a fasting blood test as it was my cholesterol too (which was high fyi), would that make a difference? Also, I just read somewhere that TSH levels can go down when it's hot and it's been pretty hot in London lately! Do you think that would effect it?

I did get the list of endo's from Louise and I think the next step is to see one of them, esp as you say, some endo's don't get it either (though my bank account is whimpering at the thought). Some of them do seem to work with insurance if there's a referral, so I hope what the GP gives me will work.

Again, thank you!

xxx

[tegz]

As well as antibodies- I'd be tempted to throw in a 'FreeT3' check, if you you go forward with further tests.

This will both see if you are low there [NHS won't do T3, only via Endo] -and if decently in range act as a marker for later progress to be gauged.

If not in range , that will be useful -as T3 is the 'working' hormone.

You can self refer to a health clinic for tests but it will cost.[~£200, but worth asking BUPA]

[southernbee in reply to tegz]

Thank you tegz! I'll make sure I'll get that too and hope BUPA covers it

[gracegirl78]

i just saw this post and wanted to reply, because your second results look a lot like ones i had done over 2 years ago, my tsh was "normal" but my ft4 was very low in the range. I was just told the results were "normal" no further action...i didnt get checked again until this year. Back to 2 years ago...got married, got pregnant in the december, had a NIGHTMARE first 3 months of pregnancy, felt like i was going insane, terrible mood swings and depression, went to gp, asked her to check my thyroid but she refused. Thankfully gave birth to a lovely healthy (albiet big) baby girl...

8 months later....i get diagnosed hypothyroid with levels that are through the roof.

That was 2 months ago...i wonder how long i have really had this illness but been undiagnosed.

Im so glad your getting it checked out!!

Dont give up. I hope you get the diagnosis and treatment you need

xx

[southernbee in reply to gracegirl78]

I'm so sorry to hear you had to go through such an awful time before getting your diagnosis! That's truly shocking that your GP refused to check you. Thank you so much to replying to me as it shows me how imperative it is that I get this looked at by a Dr. that is informed.

Just as an aside, what's amazing to me is not just GP's who can't think outside of test results and ignore symptoms but that when results are so borderline, like yours (or mine), there's no recognition that we might not be hypothyroid yet (according to their criteria) but that we're probably on the way, as you were. Surely, when results are so close to being abnormal, any sensible Dr. would suggest coming back in 6 months time to do another test/see how we are? Especially if someone with results like ours gets pregnant, red flags should go up! From what I'm reading everywhere even organizations that treat test results as the holy grail realise that results such as yours or mine indicate a very high chance of developing hypothyroidism within the next few years... It truly blows my mind. I understand GP's are only human and we all make errors but this is such a common condition you would think they would have more of a clue...

Anyway, sorry for the rant, I'm just horrified by what you went through. And I'm so glad your baby is healthy (and I'm sure beautiful!) and that you are now being treated

xx

[gracegirl78 in reply to southernbee]

hello! yes she said there was no point testing my thyroid in early pregnancy because the levels go up anyway in pregnancy...although i really think she should have...and when i told her how my first pregnancy was nothing like this she said "ah well, every pregnancy is different..." i should change doctors really. Although in other ways she is a very good doctor.

Anyhow, im glad you are pursuing this and wish you all the best...just so you know, i had no problems at all getting pregnant, in fact it was a bit of a surprise

let us know how you get on!!

xx

[Hidden]

Ask your GP or endo to consider secondary hypothyroidism. A drop in TSH together with a drop in T4 should really trigger consideration that the problem may be coming from the pituitary and not the thyroid itself. If this is the case, the TSH figure is even more irrelevant in diagnosing hypothyroidism.

[southernbee in reply to Hidden]

Hmmm... Good to know. Thanks Maclh!