Advice please!

[Koababy20]

Hi all, I’m new here, but I’ll try to be as brief as possible!

I’ve been treated for Hypothyroidism since 2004 ( diagnosed by the late, great Dr Gordon Skinner by my symptoms and not the biochemistry thankfully)

All well for past 19 or so years, on T4 125ug and then T3 4 x 20ug added gradually 12 years ago as I was a poor converter of T4 to T3.

Fast Forward to 2023 and since having 2 bouts of covid that year I have been feeling very tired, and breathless. Bloods done in May showed T4 as 17.5 (range 12-22) and T3 23.2 (range 3.1-6.8). (T3 was usually around 13, T4 usually around 17) TSH was 0.01 (and always has been throughout my treatment under Dr Skinner). Estrogen levels were also very high (then on 100ug transdermal patch )

In May 2023 GP reduced T3 to 3 x 20ug daily and Estrogen to 50ug daily which brought estrogen into a more acceptable level and T3 down to 15.4 and T4 up to 19.4. TSH still 0.01

Since November however I have been experiencing more extreme breathlessness and excess sweating, reaching an awful pitch in December with heart racing, flushing anxiety, tremors etc,.

In consultation with GP I agreed to decrease T 3 every 2 weeks as symptoms were so severe, since 19th December I have only been taking T4 125 ug daily, with good symptom improvement but not “there” yet! Peroxidase antibodies done on 19th December were 70 ( range <34).

Saw private Endo on 8th January who asked me to reduce T4 to 100ug daily for next 6 weeks , following bloods done on that date showing TSH 0.02, T3 4.2 and T4 21.9 (ranges as above). Still suffering from poor sleep, and BAD anxiety, bad choking sensation in neck…hoping this plan of action improves things???

(Thyroid scan last week showed no abnormalities, the Doctor said all looked good and thyroid was actually slightly smaller than normal, ????)

[TiggerMe Ambassador]

Hello, welcome along 🤗

Wow, covid really does shake things up, what did your bloods look like before covid?

Certainly looks like your levels are in a much better place now but it's going to take time for your body to readjust from it's over medicated state, it's looking like 100mcg T4 might be about right and then you may need just a little T3 to optimise

[Koababy20 in reply to TiggerMe]

Thanks so much for your kind advice. My T3 and T4 were always out of range but with no over treated symptoms until the last several months. My TSH has been 0.01 for 20 years! Yes I am hoping to have some T3 introduced at some stage, Covid has shaken things up unfortunately!!!

[Charlie-Farley]

Hmmm

Just watch points with the doctors Koa, many doctors and endocrinologists dose by TSH the absolute opposite to Dr Skinner. If your metabolism returns to pre infected state then you may need to reintroduce part or all of your previous regime.

Thyroid scan last week showed no abnormalities, the Doctor said all looked good and thyroid was actually slightly smaller than normal, ????)

That statement would concern me as with Hashimoto’s the thyroid can become damaged over time as the autoimmune system attacks the tissue- thus making it smaller.

Still suffering from poor sleep, and BAD anxiety, bad choking sensation in neck…hoping this plan of action improves things???

These symptoms are just as relevant to being under medicated as over medicated.

Just out of interest how much do you weigh? If you check dosing guidelines for Levothyroxine 1.6ug per kg or 10ug per stone it gives a guide to how much levothyroxine you might need- it’s a guide not a diktat.

Are the T4 and T3 quoted total or free? It can make a difference to interpretation.

If you were on T3 that produced FT3 levels well above the top of the range with no adverse effects (prior to your bouts of Covid) with no symptoms of over medication it makes me wonder if there was some cellular resistance to FT3 🤔 the apparent over medication could have been your autoimmune system flaring up attacking thyroid and releasing hormones into the bloodstream.

I’m calling in the more experienced folk

 RedApple  SlowDragon  helvella

[Koababy20 in reply to Charlie-Farley]

Thank you so much for your very informative and kind advice, it is very much appreciated!

Yes the Endo I saw was very keen to have the TSH raised and warned me of the dangers of not doing so ( atrial fibrillation, stroke , loss of bone density), even though I have had nil TSH for over20 years!

How long do you think it will take before the reduction in T4 from 125ug to 100ug will show any effect, good or otherwise? I am now 3 weeks on 100ug and have to wait another 3 to get bloods done.

Should I get Trab antibodies tested as well ?

The T3 and T4 results I quoted are free .

I weigh around 9 stone 12 so I suppose 100ug is the amount suited to that weight ?? We will see…

[Charlie-Farley in reply to Koababy20]

Information on Low T3 effects on our bodies and there is also a very good pinned post on TSH by tattybogle.

Courtesy of   humanbean links they provided in another post. (Thank you HB)

These are from thyroid Canada -

Still no proof that low TSH causes harm to bones.

thyroidpatients.ca/2019/07/...

The LOW T3 effect on the cardiovascular system

thyroidpatients.ca/2018/07/...

And a few more

Midgely TSH poor indicator paper

bmcendocrdisord.biomedcentr...

Abdu et al Low T3 as a Predictor of Poor Prognosis in Patients With Myocardial Infarction With Non-Obstructive Coronary Arteries

frontiersin.org/articles/10...

Chaker type 2 diabetes and low thyroid function.

pubmed.ncbi.nlm.nih.gov/276...

[Koababy20 in reply to Charlie-Farley]

Thanks so much !! I’ll get reading! Much appreciated!

[CrochetDimples]

It could be long covid. The symptoms fit.

[Koababy20 in reply to CrochetDimples]

Thank you for your kind advice. Yes the symptoms are indeed very similar, I think Covid has certainly affected my thyroid function

[CrochetDimples in reply to Koababy20]

I had covid in September. I am still exhausted, to the extent that I've been signed off work since. Thyroid values seem OK but being tested again in a month. Also will have B12 tested then, as deficiency in it is linked to hypothyroidism and causes fatigue and a raft of neurological issues.

[Koababy20 in reply to CrochetDimples]

So sorry to hear that, Covid wreaks havoc on the thyroid for sure, if your symptoms persist ask your GP to increase your thyroxine slightly to see if there is any improvement

[GlowCoach Administrator]

I'm just checking if during your time being hypo you have been keeping an eye on your key vitamin levels and supplementing them to achieve optimal levels?

Being hypothyroid means we have low stomach acid and cannot absorb vitamins well from our food, regardless of great diet.

For thyroid hormone to work well we need OPTIMAL levels of ferritin, folate, B12 & D3.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[Koababy20 in reply to GlowCoach]

Thank you so much for this advice! I certainly will get these tests done at my next appointment, I do take B12 timed release capsules daily and vitamin D as well ,

Good to know about the biotin, thank you

[CrochetDimples]

Thank you. No, my vitamin levels have not been tested regularly at all. I'm now getting it done though as I realise it may be causing my symptoms.