Cryptic Thyroid profile (as yet undiagnosed)

[Noona123]

Newbie here. I'm impressed by wealth of info I've started to discover here and wondering if anyone could throw some light on my test results as I can't find anything the same.

I have suffered from fatigue, aching muscles, low mood etc for about 5 years but nothing major diagnosed except low iron in 2017 and low D in 2018. My GP orders lots of tests now and again when I say I'm still exhausted and I'm now on Sertraline and HRT patches but still get really tired and achey.

In MAY 2022 tests showed my Thyroid was 'abnormal' and a GP consultation over the phone said it was showing as 'hyperthyroid' but I get more symptoms of hypothyroid but do tend to have sudden bursts of energy but they don't last! Results were

TSH 0.07 (0.35-4.94)

FT4 12.2 ( 7.5 - 21.1)

FT3 4.3 (3.8 -6.0)

GP said to re-test in 6 weeks. I did and towards end June 2022 and they had now apparently gone slightly 'hypothryroid':

TSH 5.38 (0.35 - 4.94).

FT4 8.3 (9 - 19.1)

My thyroid results had never been flagged up before as abnormal and I went back over my records and found my previous results (about once a year since 2017) were all TSH just below high range and T4 on low end of range.

Head Nurse clinician said to re-test mid - end August and this time I've noticed he's ordered anti body tests and parathyroid profile as well but didn't seem to know what might be going on. My MAY results (hyper???) were taken 4 days after I got back from holiday in Greece and I did notice out there my appetite had increased, I ate sea food including octopus and was also taking daily L-TYROSINE (stopped soon after) which I'd been doing to increase my energy levels about 6 months previously. I had also started the HRT patches a week before my hols so was wondering if this could have affected the first set of 'hyper' results. Also, I drank Greek wine (in moderation) and I don't normally drink much!!

Also = for last few weeks I've had ear ache and swollen glands on and off. I told the nurse practitioner this on phone consultation.

[SeasideSusie Remembering]

Noona123

In MAY 2022 tests showed my Thyroid was 'abnormal' and a GP consultation over the phone said it was showing as 'hyperthyroid' but I get more symptoms of hypothyroid but do tend to have sudden bursts of energy but they don't last! Results were

TSH 0.07 (0.35-4.94)

FT4 12.2 ( 7.5 - 21.1)

FT3 4.3 (3.8 -6.0)

Does your GP not understand that to be hypERthyroid you would have to have FT4 and FT3 over range? You can't be hypERthyroid with low in range FT3, just because TSH is low does not make a person hypERthyroid. Their ignorance never ceases to astound me!

You have been swinging between low TSH and over range TSH. This could suggest autoimmune thyroid disease known to patients as Hashimoto's.

Please make sure you get Thyroid Peroxidase antibodies tested next time a thyroid panel is done, and see if you can also get Thyroglobulin antibodies tested as well, I'm not sure they can be done at primary level but it's worth asking.

[Noona123 in reply to SeasideSusie]

Thanks Seaside Susie for responding. About the lowish T3 and T4 results with Low TSH and GP calling that 'hyper', the more I read on here, I wondered that as well.It seems there is so much confusion with GPS about it all. I've always just accepted what GPs sAy when they say 'normal' but now I'm keeping an eye on test results in the future!

[SlowDragon Ambassador in reply to Noona123]

At next test get

TSH, Ft4, Ft3 ideally both TPO and TG thyroid antibodies tested

Plus Folate, ferritin, B12 and vitamin D

Always test thyroid levels early morning, ideally before 9am to get highest TSH

What vitamin supplements are you currently taking?

GP obviously needs to get new glasses or go back to med school

Low Ft4 and low Ft3 can’t be HYPER thyroid

If 2nd test has TSH over 5 you should be started on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Standard starter dose of levothyroxine is 50mcg

[Noona123 in reply to SlowDragon]

Thanks SlowDragon. I have been taking Vit D supplements 3000 a day last 2 weeks after 'sufficient' result of 60 (towards low end of range). As advised on here I'd like to get it to 100. In 2018 I was given loading doses as it was very low (20 I think) and since then have been taking Vit D on and off so I was surprised it was not more when tested a couple of months back.

I've also just started taking iron again as recent results showed I was just above low limit. and in 2017 I was under the limit and extremely tired.

in recent lot of tests I had Folate done and think it was pretty high - is that good? Also Vitamin B was okay I think. Very tired at the moment so will look them up tomorrow.

Thanks for the link re starting Levo. Although I was shocked at first that there was a problem with my thyroid (something I didnt know much about), now I'm hoping it is my thyroid and I can get treated as I've felt lousy for ages and blamed it on my age (57) - thought maybe symptoms were to do with peri menopause, it's difficult to untangle! It would be lovely to have my energy back again!

[SlowDragon Ambassador in reply to Noona123]

Low vitamins suggests you have perhaps been hypothyroid a while then

Being hypothyroid frequently causes low stomach acid and leads to poor nutrient absorption

[jimh111]

This is clearly hypothyroid, especially the low fT4. Your TSH is much lower than we would expect given your combined fT3, fT4 levels. From my own experience and numerous posts on this forum patients with results like yours have much more severe hypothyroidism than we might expect from the blood hormone levels. You need to persuade your doctor to ignore the TSH because it is not responding as it should to your fT3, fT4. TSH results are invalid in your case.

They need to give you thyroid hormone supplementation to improve your fT3, fT4 (especially fT3) and according to your signs and symptoms. Be persistent and make sure they pay more attention to your symptoms than the blood numbers.

[Noona123 in reply to jimh111]

Thanks for responding jimh111. Interesting what you say and I feel you're right. I'll ponder a bit more about it all. I'm not sure I can put up with the symptoms for another month to be honest (they feel like they're getting worse) so might get a private test (so as to make sure I get a T3 result) and use that as ammunition so to speak!