Any thyroid experts? Help needed

[SinkGirl]

I’ve had textbook symptoms of hypothyroidism for years now, first experienced 11 years ago when I was on a drug that works on the pituitary gland. I was diagnosed with ME. Every time I had blood tests I was told it was “all normal” and couldn’t be my thyroid.

Paid for a more in depth private thyroid test in September and my TSH was normal but other levels were fairly low given that my TSH was normal:
FT4 12.5 (12-23)
T4 77.6 (66-181)
FT3 4.55 (3.1-6.8)
TPO 12.7 (0-34)
TGAB 13.2 (0-115)

I did a lot of research and I was concerned about the possibility of central hypothyroidism since it can cause similar results. Met with my GP multiple times and he even spoken to an endocrinologist but they both said that nothing could be done while my results were in normal range.

I repeated the test in March as I was feeling worse but the results were totally normal
TSHb2.3 0.27-4.3
FT4 15.6 12-23
T4 123 66-181
FT3 4.95 3.1-6.8
TPO 16 0-34
TGAB

I did read that some people with Hashimotos don’t show any antibodies, and that antibodies should really be at 0 because there shouldn’t be any present if you’re well.

I think I need Dr House... does he take self-referrals? 😂

The thing that makes me doubt hashimotos is that I’ve never had any hyperthyroid symptoms ever. Although having said that, when I was on the drug that put me into temporary menopause for two years I lost several stone and had a lot more energy but I thought that was because the endo was being dealt with. Ever since I came off it (9 years ago now) I’ve found it impossible to lose weight and have had all the other symptoms too.

1.3 is the lowest Tsh I’ve seen on results. I also had it tested during pregnancy in mid 2016 but it was only around 1.8.

I’m wondering if I should bite the bullet and do more tests before I see the GP in a couple of weeks. Maybe something else will show up.

The problem with thyroid problems is that unless it is black and white, almost everything is possible!

I started with all the symptoms of hyper. Lost a stone in a month without trying, heart going mad, hands shaking and the rest. Tested, normal tsh, but very high antibodies. By the time I had the blood test though, ie. I waited until things were really bad to go to the GP, but of course, by the time I got an appointment with him, a week later, and then the blood test, yet another week, my symptoms had more or less settled.

This happened another two times, so again, by the time the tests were done, tsh normal. Antibodies had gone down within borderline. It's 6 months ago that I started to have the opposite symptoms, mainly a very low resting heart rate (under 50, heart rate going down as low as 42 at night) but blood tests still showed normal tsh (although going up but only to 4) and antibodies are now totally normal!!

I understand that on this basis, my doctor doesn't think my issues are related to my thyroid because surely, if it was, my antibodies would be going up, not down!

It's all very much a mystery but what is sure in your case is that your folate needs sorting as whether your thyroid is messing about, low folate will cause anemia and the dreadful symptoms that go with it.

I can recommend the private endocrinologists at Impperial College. They will refer you back to the NHS once you have a diagnosis etc, so you are paying only for the first two appointments.

Where has a TSH score of 10 come from? I have been hypothyroid since 1990. The TSH range then was 0.4 to 4.5. It is now 0.4-4. I have just checked a few old results sheets. With 100mcg mine's usually about 2.

The lab upper limits are generally 4.5 - 5.5 but national guidelines are that you are not hypothyroid until your TSH is above 10 and your FT4 is out of normal range. Between 4 and 10 it’s subclinical hypothyroidism and it’s up to your GP whether they trial treatment or not (usually not, you’re just told you’re “borderline”, even if your TSH is 9.5,
It’s absolute madness)

My CCG use a lab range of 0-5.5, but even over 5.5 that’s still not enough for a diagnosis and treatment.

OK my wording when GP refuswd a referral for something else. I work fulltime and intend to continue working full time. It is better for my wellbeing if I do, better for my family and better for the NHS because I will continue to pay tax. I got a look, a completed referral form and a grudging comment about it not being personal. I wanted a referral to a neurologist after breaking my back. GP's response " we usually refer if you are still in pain after 10 weeks" and how long does the referral take? "10 weeks". So my GP was happy to leave me in pain and unable to work for 20 weeks. In the event the referral took two weeks but something called kyphoplasty was recommended and optimal time was within 4 weeks. In the event my pain subsided and because damage was so severe I'd have needed pi s and screws so I didn't go ahead after getting results of the MRI.

The NHS is really not doing its job any more. Be your own advocate op. Ask the GP if he/she is prepared to take responsibility if your health deteriorates further.

Alternatively a private referral to an endocrinologist will probably sort you out for £600-£700. They will need a couple of sets of bloods but will write to GP with recommendations.