Just when it was beginning to make sense.... (apologies for the long post)

[AmandaK]

I recently posted TFT results from October 2017 in which the FT3, FT4 and TSH were as follows (NB I have never ever been diagnosed with any thyroid problem, but with ME/CFS in 1988):

TSH 1.310 mIU/L (0.270-4.2)

FT3 3.86 pmol/L (3.74-6.11)

FT4 14.9 pmol/L (11.5-19.6)

NB I did post these results in 2017 and it was suggested that there may be a problem with the pituitary/central hypothyroidism. So I contacted the Pituitary Foundation but because other pituitary hormones were ok I was told everything was fine.

I then had the Blue Horizon DNA Blue Thyroid Genetic Panel. The Thyrotropin Releasing Hormone Receptor (TRHR) gene result showed a double G (guanine neucleotide) in the red (for potential 'danger') zone, indicating that it is either the wild type, with no genetic variations, or inherited from both parents.

This was the explanation:

'The 'G' result has been associated with a less responsive negative feedback mechanism. Carriers of this genotype may show higher circulating TSH:T3/4 ratio due to delayed reduction of TRH and TSH in the presence of healthy thyroid hormone levels. This may mean that the body is subjected to a less efficient response to changing thyroid hormone requirements.'

I asked for further info:

'The ‘G’ result of the TRHR gene could certainly point towards central hypothyroidism due to poor signalling between the hypothalamus and pituitary. The hypothalamus produces TRH which in turn stimulates the production of TSH by the pituitary. The ‘G’ result in TRHR can confer lower receptivity to TRH which could then reduce production of TSH. A simple but helpful intervention would be to increase blood flow to the brain.'

I also have problems with the FKBP5 gene, to do with cortisol regulation and lowered stress resilience, which also has an impact on thyroid hormone levels.

I then decided to revisit the issue of central hypothyroidism and found a number of articles which stated that it was possible to have independent diagnosis of a pituitary problem vis-a-vis thyroid hormones (in other words, the other hormones can be normal), which contradicted advice given by the Pituitary Foundation.

So, I decided to have TFTs tested again, with the following results (bloods taken 1.30pm yesterday):

TSH 2.220 mIU/L (0.270-4.2)

FT3 4.08 pmol/L (3.74-6.11)

FT4 15.4 pmol/L (11.5-19.6)

Plus antibodies:

anti-TPO 9 IU/mL (<34)

Anti-TG <10 IU/mL (<115)

I have had all other vits and minerals tested fairly recently and all are ok (B12 through the roof and Folate in the mid range).

So, the TFTs show an improvement and apart from the FT3 (which from the articles I have read indicate NTIS, rather than pituitary) are in the healthy zone. All articles stated that the FT4 doesn't have to be below range to indicate central hypothyroidism, but also within the lowest quartile.

I had hoped for a more definitive result.

BTW the nurse at the (private) medical centre was horrified to learn that the NHS didn't routinely test for FT4 and that patients had to pay £100+ for tests that should be readily available. She suggested I showed the results to the GP. But I'm not sure now, given these latest results. I'm more confused than ever now.

I have been very grateful to those who have helped me on the forum - some have said I might have a battle on my hands to get listened to by the mainstream medical profession. It's even been suggested (not on this forum) that I go armed with all results to a university professor or two associated with a reputable teaching hospital!

[AmandaK]

Thank you, I normally do go as early as I can and fast, but unfortunately I was unable to do so on these occasions (the earliest the health clinic opens is 9am and it's not guaranteed the phlebotomist would be there at this time. The clinic only operates at weekends, so very limited).

Also, given the fact that I was restricted to the afternoon, I worked on the principle that the FT3 would be at its lowest in the mid afternoon (and this seems to be borne out). I don't know if the GP would agree to having TSH and FT4 done through the NHS, based on the private testing.

[SilverAvocado]

Hi AmandaK, Have just skimmed back at your old posts and seen you had these results in 2016-ish:

FT4 15.59 (12-22)

FT3 4.17 (3.1-6.8)

TSH 2.38 (0.27-4.20)

And in maybe 2011 when you first posted had a raised TSH of over 3.

It makes me really sad to hear this, as you've had thyroid problems for years and years and not been diagnosed or treated You must be really ill, and on top of that to be fobbed off by doctors and not know what's going on is horrible.

I've also seen that you've been told Central hypothyroid is an issue since at least 2016 on the forum, too.

I think my advice to you would be that you've got to do something about this! Push to get a diagnosis if you want to, but if I were you I'd start self medicating ASAP, either T3 or NDT. I have a friend from the forum with Central hypo, and this is what she's had to do, although she does see an Endo and has had some investigation of the pituitary over the years. I'll see if I can get some more details for you.

There are two forms of Central hypothyroid, Secondary and Tertiary. Secondary is when the pituitary is the issue and isn't sending a signal, Tertiary is when the hypothalamus isn't producing TRH which then signals the pituitary to make TSH, so if you've found evidence your hypothalamus might be struggling it's very possible you have tertiary rather than secondary hypothyroid. I have no idea if this has additional health implications, but it almost certainly does because the hypothalamus is part of the brain.

The thing that I definitely do know is I've seen three freeT3 results for you:

2016-ish: FT3 4.17 (3.1-6.8)

2017: FT3 3.86 pmol/L (3.74-6.11)

2019: FT3 4.08 pmol/L (3.74-6.11)

These all look really terrible! FreeT3 is the number that most predicts symptoms, and yours are absolutely rock bottom. When I see these it just breaks my heart, and in some ways it doesn't matter what the actual cause is, you need to get that number raised. You will feel a huge relief in symptoms, probably within days, when you start thyroid hormone replacement.

[SilverAvocado in reply to SilverAvocado]

Have just seen you saying it's confusing that your recent results have a TSH and freeT4 that look quite good. It is a little strange. Something that makes me suspicious is that your freeT4 figure is remarkably similar in all three TFTs, but in this old one I posted it's in the bottom quarter, and in the two newer ones in your original post the ranges are narrower so it works out about halfway up.

You're right that halfway up the range is the ideal, healthy place for freeT4 to be.

However, your recent TSH is actually a bit raised, a healthy TSH is between about 0.8 and 1.8, so yours is outside that. My personal cut off for a TSH that demonstrates hypothyroid is 2.5, so in the recent and 2016-ish test yours almost reaches it, and in the very old result from your first forum post it is over the threshold.

Looking at the whole set of results, there is quite a bit of up and down variation in both TSH (and possibly freeT4). It just looks like your thyroid and its feedback system is struggling, and at some points it's managing to squeeze out better results than others.

The big thing that tells us something is badly wrong is that your TSH is not responding to the very low freeT3. In the early stages of thyroid illness the body will pull out all the stops to keep freeT3 stable, so the fact yours can't do it at all shows us this is a well established illness.

I will dig up a friend's results that show a big contrast:

TSH: 8.76 (0.27-4.2)

FreeT4: 24.72 (12-22)

FreeT3: 4.49 (3.1-6.8)

This is a medicated result, so the interpretation is a bit different, but you can see how the TSH has made a big response to the freeT3 not being high enough, despite the more than adequate freeT4. This person's result is a fairly uncommon pattern, but it crops up on the forum occasionally.

[AmandaK in reply to SilverAvocado]

Thank you SilverAvocado for your considered, kind and compassionate response. Yes, it is all a bit strange and my TFTs have definitely been all over the place over the years (even going back to 2014). I once asked the GP about FT3 levels and got the usual response about FT3 testing not being reliable or useful!

I did try ThyroGold for a while (one 150mg tab per day as suggested by the naturopath), but ran out while waiting for the naturopath to advise whether or not to change to Thyroplex (he has emailed today and said I should continue with ThyroGold; I've asked about dosage).

My energy levels are also all over the place (unsurprisingly) and I manage my health issues by freelancing, which gives me flexibility. Working 9-5 for 37 hours a week would be impossible!

I look forward to learning more from your friend's experience. Thank you again.

[SilverAvocado in reply to AmandaK]

Thyrogold is a formula designed by John Lowe. A doctor held in high esteem in the forum. Its a bit confusing to use, though, as it is not on the same dosing scheme as other NDT (natural dessicated thyroid). It seems it isn't public about how much hormone it contains in order to maintain its OTC status.

Here is an old thread on the forum discussing it: healthunlocked.com/thyroidu...

Based on what they say it looks like the dose you took was equivalent to about 1 or 1.5 grain of NDT.

What I would suggest is you dose thyroid hormone exactly as anyone with more common thyroid illness would. The goal of thyroid hormone replacement is to raise freeT3 to decent levels, often people will feel better with it at the top of the range.

If you wanted to start with Thyrogold that would mean starting on maybe half of what you were taking before, the equivalent of about half a grain of NDT. Stick with that for 6 weeks and then have a new blood test. Somewhere like Medichecks or Bluehorizon do thyroid panels as mail order finger prick tests.

You'd be looking to increase by a quarter of a grain or so each time, until your freeT3 is in a good state and/or symptoms are resolved. I believe there are writings by Dr Lowe available online about dosing, so he may suggest something quicker than what I've outlined. I've described the most conservative way to do things

If you found after 6 weeks or maybe after tuning at that point and retesting after 12 weeks that you weren't getting improvement you could think about moving on to NDT or T3. I only say that because I'm not familiar with Thyrogold. It may be a great solution.

[BadHare in reply to AmandaK]

Hi AmandaK ,

SilverAvocado asked me to take a look at your post as I'm 100% certain I have secondary hypothyroidism as I have had most of the symptoms for over 40 years, but with "normal" test results, including T3. I worked it out for myself, & self-medicated 4 years ago with advice from here, after finding out I had a pituitary adenoma. Doctors don't normally test for this, or order MRI's to confirm whether this is a cause of symptoms, which is poor as it's a fairly common health issue. I've found both doctors & endocrinologits utterly ignorant & useless, as it seems do many people with the usual forms of thyroid disorder.

Thyro-Gold didn't agree with me at all, but I have found Nature Throid & WP Thyroid very good, & I now take a combination of NDT & T3, mostly successfully. I can't afford to eat well, take the necessary supplements & self-medicate as well as having private blood tests. Initially I used the Barnes Basal Body Temperature Test for diagnosis & as an indication of whether I was getting better. Also my previously weak pulse Now I use how I feel each day/week/season as a guide to how much & what combination to take.

I'm sorry I can't help with getting an official diagnosis as the medics don't seem to know how to understand symptoms over inacurate TSH analysis, but get in touch if you think there's anything I can help you with.

Mel

[AmandaK in reply to BadHare]

Thank you so much Mel for your message. I'm sorry for my late reply - I've had a very busy few days followed by a monumental crash!

I find it unbelievable that the doctors have no idea how to treat someone with a known pituitary adenoma, an obvious cause of secondary hypothyroidism. Did you see an endo with expertise in pituitary disorders? I'm currently amassing evidence to present to one of the GPs at my surgery who has an interest in ME/CFS in the hope she will refer me to a suitable endo (hopefully of my choosing if I can find someone who will take me seriously).

It seems that the TRH tests have been withdrawn - or have they? They seemed a useful test in distinguishing secondary from tertiary.

I hope to come along to the 5 June support group in Liverpool so perhaps see you then? It would be good to meet you.

Thanks again, Amanda