No symptom relief from levothyroxine :(

[mayz131]

I’ll try and make this as brief as possible but it’s been a long journey.

I was diagnosed with subclinical hypothyroid in Feb 2023 after TSH was raised (7.49) - T4 was not tested so they repeated at my request. TSH was raised again (6.12 ) and T4 at the bottom range of normal (11.5). GP asked if I was symptomatic and I was (feeling cold, extremely lethargic, hair loss and weight gain/maintaining weight on extremely low amount of calories) so decided to trial 3 month trial of levothyroxine 50mcg.

In March 2023, was in A&E with heart palpitations so TSH was tested (amongst other things) - 1.69.

In June 2023, over 3 months had passed and concerned symptoms not getting better on levothyroxine but thought worse fatigue, brain fog and felt ‘puffy’ with water retention. Expected bloods to show hypothyroid again and meds needing increasing, however to my shock and disbelief, TSH was very low (0.02) and T4 was high (26.2), T3 normal (5.6). No action taken by GP until I asked for repeat in July as did not have any hyperthyroid symptoms (besides tachycardia but I’m on stimulant medication for ADHD) and because I had not done test in the morning so wasn’t fasted and had taken levothyroxine, hence high fT4 may have been false. TSH came back as 0.03 so still very low and T4 upper end of normal - 21.4. Told to reduce levothyroxine dose to 25mcg as I have been ‘overtreated’.

However, I am experiencing the opposite symptoms. I am sleeping 9-11 hours per night, but still have extreme fatigue and brain fog throughout the day. I gained 3kg this month despite eating 1200 calories per day, reducing to 1000 calories now because I am paranoid about the weight gain. I regularly have temperatures of 35.5 degrees C to 36 degrees C. The only time my temperature rose to above 37 degrees was when I had a ‘fever’ from COVID in late Feb. I have extreme bloating and delayed stomach emptying (gastroparesis) which I take medication for. Lately my symptoms have become worse.

For reference, I have followed a strictly vegan diet since 2016. I have had previous blood/stool tests for coeliac disease and have been told they were negative but I can’t find them here for some reason - is it the same as faecal calprotectin? I do find bread and pasta make my symptoms worse and have avoided them mostly since having the coeliac test last year.

I have previously had blood tests for ferritin - latest was Nov 2022 and it was 35ug/L. My results have always been on the lower side of normal.

Vitamin D is on high end of normal (182nmol/L)

B12 is on high end of normal (110pmol/L)

I read somewhere that the ratio of T4 to T3 should be <4:1 yet mine is closer to 4.65:1 in June 2023 (the only time the NHS has tested my T3) - does this indicate a possible conversion problem?

I have ordered blood tests from Thriva for TSH, fT4, fT3, TPO antibodies and anti-TG antibodies. When would be the best time to take it? I’m assuming before 9am fasted and pre levothyroxine dose.

I have been sent the list of Thyroid UK endocrinologists and GPs - thank you!

I am convinced my T3 will be low/normal, T4 normal/high and my TSH very low.

It’s so frustrating that I’ve now been labelled as ‘hyperthyroid’ due to my TSH which is so wrong! I wish doctors looked at the whole picture!

If anyone can recommend a doctor to see RE this issue (preferably in London) I would be eternally grateful!

Thank you in advance,

mayz131

[SlowDragon Administrator]

Exactly what vitamin supplements are you taking

No folate result?

have previously had blood tests for ferritin - latest was Nov 2022 and it was 35ug/L. My results have always been on the lower side of normal.

most vegans or vegetarians struggle to maintain adequate iron/ferritin unless supplementing

You will need to test full iron panel test

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Medichecks iron panel test

Test early morning, fasting

medichecks.com/products/iro...

And as vegan you need to test iodine levels

Genova Diagnostics for iodine test

thyroiduk.org/help-and-supp...

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Cost: £76

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

But even if iodide levels are low it would be necessary to be extremely cautious about taking any iodine supplement. Come back with results

[mayz131 in reply to SlowDragon]

Thank you so much! I have an outstanding test from Forth Edge that I never got enough blood for (my friend tried to do it on me and the needle was so large it occluded my vein lol!) so I could use that kit provided the blood bottles aren't expired so I'll check as that one does iron and folate etc. but if not I'll ask my GP for a full iron panel and iodine as they have been harking on for ages about me being vegan so they might be 'relieved' if I've 'accepted' that it's diet related rather than hormones.

[SlowDragon Administrator in reply to mayz131]

No thyroid hormones will work well until ferritin at least over 70

You will see many many posts about low iron/ferritin on here

[mayz131 in reply to SlowDragon]

Thank you so much! Should I take a supplement before testing iron panel or wait?

[SlowDragon Administrator in reply to mayz131]

I should test first

If taking iron supplements stop these 5-7 days before test

Test early morning and fasting

[SlowDragon Administrator]

I have ordered blood tests from Thriva for TSH, fT4, fT3, TPO antibodies and anti-TG antibodies. When would be the best time to take it? I’m assuming before 9am fasted and pre levothyroxine dose.

Yes

Which brand of levothyroxine are you currently taking

[mayz131 in reply to SlowDragon]

I just found out it’s Teva

[helvella Administrator Thyroid UK in reply to mayz131]

Depending on the strictness of your vegan status, most levothyroxine tablets contain lactose, which is clearly non-vegan.

Only Teva and Aristo are vegan (from reading list of excipients).

[mayz131 in reply to helvella]

Thank you! I had no idea about this whatsoever! I have recently been switched to Teva from an unknown brand (got rid of the packaging so I can’t check urghh) after my dose reduction. I’m technically cow’s milk intolerant (not necessarily lactose but the whole protein) as well as being vegan so I’m surprised I absorbed the other levothyroxine well if it had lactose in it 😳. I will be a bit more stringent about reading ingredients of any medicines I get, particularly as I may be switched brands by the NHS as I’ve heard this happens fairly frequently! 🫣

[helvella Administrator Thyroid UK in reply to mayz131]

The lactose used in medicines is extremely pure and usually regarded as perfectly safe for those who are intolerant to milk proteins.

And intolerance to lactose itself is often dismissed due to the assumed small quantity used in forming tablets and the (mistaken) belief such small quantities can readily be tolerated. My documents (mostly) identify the amount of lactose in UK levothyroxine tablets.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

helvella.blogspot.com/p/hel...

[mayz131 in reply to helvella]

Thank you helvella! You’re a ⭐️

[SlowDragon Administrator in reply to mayz131]

Teva doesn’t suit everyone, but it is lactose free

Aristo (also called Vencamil) the only other lactose free levothyroxine. Currently only available in 100mcg tablets

ferritin - latest was Nov 2022 and it was 35ug/L. My results have always been on the lower side of normal.

Low ferritin increases risk of developing autoimmune thyroid disease

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

[mayz131 in reply to SlowDragon]

I’ve tracked all of my blood results in a spreadsheet and it’s super fascinating to see the trends! When I’ve felt particularly low and depressed or fatigued I’ve had elevated TSH, low iron and low vitamin D. 😳 I’ve sent off my bloods just now but they didn’t include iron as it was a thyroid only panel.

[RoseStar]

Similar situation! Although TSH was only 5 when diagnosed. Positive TPO and TG antibodies

[mayz131 in reply to RoseStar]

I am just sending off my bloods now with Thriva (trained in phlebotomy so did it on myself as I can never get enough from a finger-prick/lancet haha 🫣😂) - will update everyone when I know the results. TPOs were negative under the NHS but TGs never done so will be interesting to see what they show.

[RoseStar in reply to mayz131]

I was diagnosed with just positive TG in March privately (TPO was previously negative on nhs in October) but I just asked for a retest of my TPO on nhs and it was positive as I was worried they’d misdiagnosed me with having to keep lowering my dose!

[mayz131 in reply to RoseStar]

I think my GP tried to do the TG ones but wrote the wrong thing - I’m not sure as it says ‘request unacceptable’ or something like that on my NHS app. 🥺

[RoseStar in reply to mayz131]

I’ve never heard of them doing TG on the NHS so it might have been rejected. I had to go private for that antibody test. NHS will typically only do TPO

[Hidden]

It is worth asking your doctor for a 9am cortisol blood test, if they resist then tell them it is in the levo insert that levothyroxine should not be taken if adrenal insufficiency is present and untreated and you need to rule it out. An adverse reaction to thyroid hormone like the one your describe could be low cortisol. Make sure you are fasting before the test and drink only water.

[mayz131 in reply to Hidden]

Good idea! I had one in October but I don’t think I was fasted.

[SlowDragon Administrator]

suggest you organise iodine test next