Strange result

[Beau55]

Hi lovely people,

Complicated story following.. I have recently come off my NDT (thyrogold) as requested by new doc for testing as I was self medicating. I had been on thyrogold for two years and got myself well but had a return in symptoms and thought I would have one last stab at an official diagnosis from a doctor off the thyroid uk list. Before self medicating I had a tonne of symptoms and a ‘moderately diffuse goiter’ but annoyingly antibodies negative for TPO. I did see Dr P before he left practice and started nutri adrenal with the aim to get on thyroid but he left practice during this time 😞. I also saw an Endo who said it’s likely hashimoti but not the cause of my symptoms.

New doc asked for my first testing to be on the NDT I was currently taking which are as follows-

TSH 1.07

FT4 - 15.6 (range 12-22)

FT3 - sample insufficient

Annoyingly the sample wasn’t enough for FT3 as I struggled getting enough blood. She also tested my sex hormones, iron and folate. My prolactin came back very high over range.

Ferritin 64 (15-150)

Folate 6 (8.89-60.8)

She said my low folate and high prolactin are good indication of struggling thyroid. At follow up appointment she asked me to come off my adrenal and thyrogold and retest in 6 weeks… I agreed hesitantly. She resent out the blood form so that we could get an FT3 reading which I completed last week. So the following results are 3 weeks cold turkey.

TSH 1.7

FT4 17.6 (10-22)

FT3 4.2 (3.1-6.8)

RT3 - to follow.

Now I know it takes 6 weeks for levels to stabilise with any changes to meds but I’m totally confused how my T4 has shot up to 17.6, is anybody able to shed any light? Is it because I’m not taking the T3 from NDT now?

Prior to self medicating my FT4 was always falling at the bottom of the range, usually 1-2 points in so it has never been this high! I am due for my follow up in 3 more weeks and I have a blood pack ready to take prior to this appointment.

Another question if possible - is my FT3 at this point lowish? I have been feeling crap and I’m paranoid she will say everything fine and I’m NORMAL (those pesky dreaded words)…

Thanks in advance!!

[greygoose]

TSH 1.7

FT4 17.6 (10-22) 63.33%

FT3 4.2 (3.1-6.8) 29.73%

Yes, your FT3 is very low. Euthyroid would be around 50%

I’m totally confused how my T4 has shot up to 17.6, is anybody able to shed any light? Is it because I’m not taking the T3 from NDT now?

Probably, yes. Taking T3 does reduce FT4 levels.

Be interesting to see what your TSH is like after six weeks, because at the moment, it is low compared to your FT3. But, TSH levels do move more slowly than the thyroid hormone levels, so it will probably rise. But, by how much? Thatis the question.

[Beau55 in reply to greygoose]

Thanks for your quick response Greygoose!

Luckily the doctor I am seeing has said TSH is pointless and she completely ignores it, she is basing everything off my FT3 so I’m hoping it might drop further by the time I retest.

The problem I have always had is my TSH has never been high, sometimes even low in comparison to my T4 but I’ve never had y T3 tested until now. I’ve had all sorts of testing before self medicating to see if it was central due to low normal T4 and low TSH but you know what endos are like, I was completely healthy.

I guess only time will tell if everything will fall enough for her to diagnose and treat it or I’m back trying to self medicate again, fun.

[greygoose in reply to Beau55]

Well, to be honest, you're probably best off self-medicating anyway! I know I am.

What other pituitary hormones have they tested?

[Beau55 in reply to greygoose]

Very well could be but I was always terrified my thyrogold would dry up as they were having problems sourcing the NDT through covid. I was hoping if I could get a private prescription at least then that fear is gone and if I still end up self medicating at least I had some evidence for future that it’s been diagnosed. I liked the control I had self medicating, I just wish I hadn’t messed it up and did own testing.

I believe that might have been my only pituitary other than TSH hormone tested. She also did my sex hormones which all came back high (as suspected) as I also have PCOS. My adrenal saliva results came back normal but I was supplementing with nutri adrenal at the time and she doesn’t seem to be retesting those after 6 weeks either.

[greygoose in reply to Beau55]

I believe that might have been my only pituitary other than TSH hormone tested.

Sorry, what might have been your only pituitary hormone other than TSH? I can't see you've mentioned any other hormone.

[greygoose in reply to Beau55]

What do you mean by 'normal' for the cortisol? Mid-range? High-range? Low-range? Just being 'in-range' doesn't mean it's 'normal'.

[Beau55 in reply to greygoose]

I fully agree with this 😅 I also had the same question and also posted my results here but the damn things are hard to tell!

There is no proper reference/optimal range with the lowest being 0.

For example the 8am draw result was 13.8 ref range <20.3. So it’s hard to tell if it’s good measuring from 0 without there being a lower limit. I’m just relying on the fact she says they are ‘normal’ but in my own mind I’m thinking my am result should be higher considering I was supplementing. I may even order my own adrenal tests to complete with one of the recommended suppliers with the graph which shows where you fall. Do you think that’s a good idea?

I’m just bummed I spent £70 for her adrenal test which seems pretty useless!

[greygoose in reply to Beau55]

Yes, they are pretty useless. You'll only find 0 cortisol in a corpse! I think it's a very good idea to get your own saliva tests done.

[Thalia56]

I see you had negative antibodies for TPO. Have you ever had TG antibodies tested? The medical establishment (at least in the U.K.) from my experience seems to be in denial that one can have raised TG but not TPO, but it happens - perhaps uncommon, but certainly not rare. If you haven’t yet been tested for this, I wonder if a TG Ab test might help you gain a diagnosis.

[Beau55 in reply to Thalia56]

I have had TG AB antibodies tested and they weren’t high either unfortunately! I was going that would be the case as well as it would give me answers. I’ve had an ultrasound around 6 years ago which showed a few small fluid filled cysts so I’m now trying to find a private ultrasound to see if they can see any evidence of hashis!

[Thalia56 in reply to Beau55]

Im sorry that was a dead end. I hope you find an answer soon; in the meantime, I’m sure some of the more knowledgeable people here will have some advice.

[HighlandMo]

Don’t know if my reply will help but I went through the same thing quite a few years ago. I decided I had to let my GP know I was self medicating (after seeing Dr P who was then winding down into retirement). I reluctantly came off everything so he could do base tests but I ended up so unwell and had no useful input from the GP for my troubles. It was a complete waste of my time and my health and I am now back to doing things myself. It took a long time to get things back to normal after that little experiment.

[Beau55 in reply to HighlandMo]

Ah thank you, it certainly does help! It makes me feel less alone and certainly less crazy 😜 Yes this has been quite the experiment but to be honest I was no longer well before deciding to see her so I haven’t really lost anything in that regards. It has also pushed me to learn more for if I self medicate again and found this forum and learnt a lot more so if I end up self medicating again I’m sure it’ll be a lot easier.

Have you done everything yourself since Dr P left us? I really wish he had found someone to pass his work on too. Do the doctors know you are self medicating, how has that been? I never told mine but they kept ringing me saying I was hyper because my TSH was suppressed due to NDT so I just kept ignoring them!!