You know how you wait ages for a bus and then three come along at once?
My potted history:
2014-2019 - no diagnosis, all the classic hypo symptoms, gradually rising TSH, private blood testing and a great deal of patience
2019, Feb - finally, TGAb out of range plus TSH elevated. I take results to GP to convince GP for a trial of levothyroxine (25mcg) beginning in April. 'Subclinical' diagnosis.
2019, May - TSH has reduced to 4.16 (0.35-5.5). Dose raised to 50mcg.
2019, July - TSH has reduced to 2.92 (0.35-5.5). Dose raised to 75mcg.
2019, Aug - TSH suddenly at 0.05. FT4 above range at 17.3 (7.86-14.41). Dose reduced to 50/75 alternate days.
2019, Aug - now experiencing very hyper symptoms. Am suffering an episode of hashitoxicosis. I discontinue levo entirely.
2019, Oct - Hyper symptoms subside. I cautiously reintroduce levo again, 50 mcg. But suffer sudden vertigo, so once again, I stop the levo and await next routine blood test to see what's going on.
2019, Nov - TSH 83.46, FT4 4.1. I'm now severely hypothyroid. Diagnosis changed from subclinical to overt hypo. Recommence levo, 50 mcg.
2019, Dec - see endocrinologist, as part of my menopause annual appt. But I bring them up to speed on my thyroid situation, since the last time they saw me my thyroid was 'normal'. They take bloods: TSH now 16.5. TPOAbs are now also out of range. Referral to thyroid clinic (from general endocrine) Dose raised to 75 mcg.
2020, Jan - TSH 6.86 (0.5-5.5) FT4 11.6 (7.81-14.41) Dose raised to 100mcg
2020, Mar - TSH 4.28 (0.35-5.5) FT4 14.3 (7.86-14.41)
The reference ranges are bizarre in my region, I realise, but please note that the very top of the FT4 range is actually 14.41. My FT4 would no doubt have been above range if I hadn't skipped a levo dose the night before the blood draw.
Sigh.
If I now have my dose increased to bring down my TSH, my FT4 is going to go way out of range. My thyroid is all over the place.
In less than a year this progression has happened:
1. undiagnosed subclinical
2. diagnosed subclinical. Titrating dose, but not yet properly replaced
3. thyrotoxic with hyper symptoms
4. severely hypothyroid
5. and back to under-replaced, but now with high FT4 alongside high TSH.
Why hasn't my TSH reduced more, given that my FT4 is now right at the top of the range?
Am I not converting to FT3? Something else?
I'm due my first appointment at the endocrinology thyroid clinic next week. I anticipate very little. It took them 6 weeks to write a letter last time telling my GP to raise my dose higher than 50mcg, when I was struggling to recover from a TSH at 16. And despite the endocrinologist asking the registrar to test my FT3, he forgot to put it on the blood form, so it wasn't taken.
I intend to ask my endo for a referral to the Salford clinic, where apparently they are amenable to prescribing T3. I imagine I'm more likely to get some answers from a clinic that has a modicum of motivation to treat unusual cases.
Any wisdom you can share would be welcome!
Written by
vlc2
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Have you tried a full range of blood tests, as recommended here - eg FT3, FT4 and TSH (all in one go, early in the morning, 24 hours after last levo) plus thyroid antibodies, along with folate, ferritin, vit D and B12? You are most unlikely to get lio prescribed with no FT3 reading, as you can't know how well you convert (and hence whether you need any help) without ... and until you know where your nutrients are, and whether these optimising, you're unlikely to get to your "sweet spot" dosage-wise.
Financially, I'm not in a position to keep repeating private blood tests right now at my own expense, having done them for years to get to the point where I could push for a diagnosis. Now that I have a proper, undisputed overt hypo diagnosis, I'm in the system, so to speak. I'll make sure the endo does take FT3 next week.
My blood tests at the GP are always early morning fasting blood draws, and I skip the levo dose immediately prior to the test.
I supplement B12, folate and D, so have no concerns there, and my ferritin is always good, although it's been a while. It's never low, though.
Both TGAb and TPO antibodies have been out of range in the last year, so the autoimmune aspect is confirmed and on the record now.
I'm disheartened that my next challenge will be getting my endocrinologist to help persuade the GP that the levo dose must be raised until TSH is below 1, despite the fact that this will make my FT4 go above range.
It's not that I expect an immediate T3 prescription! It's more that I'm looking long term, and may as well get myself under the care of someone who is properly invested in treating thyroid conditions that don't behave as expected.
It's quite exhausting when we then have to confront the medical professionals who should be the ones who're knowledgeable but they are restricted to prescribing levothyroxine alone now (T4) when we used to get T4/T3.
2019, Aug - now experiencing very hyper symptoms. Am suffering an episode of hashitoxicosis. I discontinue levo entirely.
Did you have a blood test at this time? If not, how do you know you had Hashitoxicosis? What were your symptoms?
My FT4 would no doubt have been above range if I hadn't skipped a levo dose the night before the blood draw.
One should normally leave a gap of 24 hours between the last dose of levo and the blood draw. So, you probably have a false 'low' FT4, there. But, even so, it's not the FT4 that is important. It's the FT3. Hashi's people are often poor converters, so your FT3 is probably low, which is why the TSH is high.
Why hasn't my TSH reduced more, given that my FT4 is now right at the top of the range?
Am I not converting to FT3? Something else?
See above. But, the only way to know how well you convert it to get the FT4 and the FT3 tested at the same time, and compare them. The NHS will very rarely test the FT3, so it could be that you have to do it privately.
However, I would not say that your case is unusual. Nor that your thyroid is 'all over the place'. It looks like classic Hashi's to me. Your TSH has been getting higher because your thyroid has been getting smaller, due to the attacks on your thyroid. After every attack, your thyroid gets a little smaller, so you get a little more hypo. That is the nature of the disease. Unfortunately, doctors just don't understand Hashi's and how it works, because they just don't learn about it in med school.
1. the blood test two weeks prior to the hyper symptoms showing up was TSH 0.05, FT4 17.3 (7.86-14.41).
Initially it was assumed this was overmedication. However, the dose was only 75mcg, and reducing the dose did not avert hyper symptoms. Hyper symptoms were extremely uncomfortable. My resting heart rate was above 120 bpm for an extended period (its normally 60) and I was breathless and weak.
2. after discontinuing the levo, my TSH didn't return back to my usual baseline of 4-5, as you would expect with resolving a simple overdosage. It became 83. I have never been overtly hypo like that before. This strongly suggested that the toxic episode was caused by hashitoxicosis, and when the excess thyroxine was metabolised/ excreted, I was left severely depleted.
3. I suggested hashitoxicosis as an explanation to the endocrinologist, and he agreed this explained the dramatic swing, writing it in a letter to the GP
This time last year I wasn't diagnosed at all. When I say my baseline is 4-5, what I mean is untreated, undiagnosed subclinical levels. This is what my TSH has been at for years. I don't feel great at that at all. It would be really nice to experience for once what it is like to have a TSH below 1, but in the year since my diagnosis I'm yet to have a TSH in that range (excluding the horrid toxic episode).
However, the endocrinologist said that, having suddenly rocketed up to a TSH of 83, it would be unlikely that I would ever recover my thyroid function back to the original 4/5/6 I've spent years at, waiting for the diagnosis.
It's frustrating to have waited years for a diagnosis, finally get diagnosed, but then to jump around for a year from one extreme to the other, never actually coming close to experiencing proper replacement levels.
Then you have to keep pushing for increases in dose. Get your FT4/3 tested to see how well you convert, and if you need it, start pushing for T3 - or NDT. You can't just wait for your endo to make you well, because it's very doubtful that he will. He doesn't know enough about it. You have to learn about your disease and advocate for yourself. That's what we've all had to do if we don't don't fit into their uniform mould and conform to their ideas of treating hypo. They are not enough educated to understand or deal with things like Hashi's.
However, the endocrinologist said that, having suddenly rocketed up to a TSH of 83, it would be unlikely that I would ever recover my thyroid function back to the original 4/5/6 I've spent years at, waiting for the diagnosis.
No, of course you won't. Your thyroid is being slowly destroyed and there's no way to stop that. That is why your dose of hormone needs to be constantly increased to make up for it. That's what Hashi's is all about.
Have you had a thyroid ultrasound yet? Sometimes nodules can release hormone making it difficult to regulate with exogenous supplementation due to the fluctuations from the thyroid itself.
No, and I sometimes wonder by what magic patients manage to procure an ultrasound from their doctors!
I'm not sure what to expect from the very first appointment in the thyroid clinic. Is it usual to have recommendations for ultrasounds, or testing beyond TSH/FT4/FT3/TPO?
I was impressed that the consultant was able to converse about hashitoxicosis, and about targeting replacement to achieve a TSH below 1, although he failed to follow through on his promise to write this goal in a letter to my GP. I was also surprised that he volunteered information on which clinics in the UK would prescribe T3, having explained that he 'couldn't' himself, but he could refer me on to Salford or Cardiff if I wished. We discussed conversion problems and DIO genetics too.
He was more knowledgeable than I expected, but follow through was poor, as I say, the T3 test he requested wasn't carried out, his promise to tell my GP that the aim was TSH below 1 wasn't carried out, and his letter instructing my GP to raise my dose 'immediately' arrived 6 weeks too late.
I supplement with, separately; hydroxycobalamin / methylcobalamin/metafolin 800mcg/D3 5000 IU/MK2
All taken a little sporadically admittedly, but these are all generous dosages and I'm not concerned. I was very low in vitamin D and B12 a few years ago and I'm certain I'm not any more. I'm usually at the top end of the range for ferritin and iron. The last time I had my B12 tested it was above the top of the measurable range.
I won't be going gluten free.
I eat a low carb diet, which works very well for me, and so I avoid sugars, grains and flours etc BUT I make my own low carb bread with vital wheat gluten and it is an absolute lifesaver - I wouldn't sustain this way of eating without it, and the net effect is to keep me on a diet that I believe is the best for me.
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