Is this hypothyroidism and what should I ask my GP following recent private blood test?

[Dillydaffodil]

Hello

I believe I may be suffering hypothyroid symptoms. I recently did a private finger prick test as I thought I may not be converting T4 to T3.

My results were TSH 4.94 (0.27-4.2) 119%,

T4 14.7 (12-22) 27%,

T3 4.1 (3.1-6.8) 27%.

T4:T3 = 3.585

Mg 0.8 (0.7-1.0)

I have tried thyroxine twice before and had “overdose” symptoms. Hence, I have assumed I have to be really bad to go onto thyroxine again. I do feel bad enough now, as everything is becoming such an effort. However, I am concerned I will not tolerate thyroxine now. First time took 3 months, second time took under 3 weeks to feel really bad. I felt so much better after coming off thyroxine both times. (Full details in my profile. My apologies it’s long.)

Can anyone advise please:

1. What my problem may be?

2. What should I ask my GP e.g. tests/ other diagnostic tests.

I would like to get this sorted and would appreciate any feedback any of you can offer to help get me there.

Thanks

[SlowDragon Administrator]

Helpful profile, well done

You need full iron panel including ferritin tested

You’re coeliac

You may need lactose free Levo

Ideally start on Vencamil brand if possible

Standard starter dose is 50mcg

Starting on only 25mcg can make symptoms worse

Retest 6-8 weeks later

Dose is increased SLOWLY upwards, usually in 25mcg steps over 1-2 years until on roughly full replacement dose Levo …….usually around 1.6mcg per kilo of your weight per day

[Dillydaffodil in reply to SlowDragon]

Thank you SlowDragon on those clear pointers of the way to go forward. 👍

[jimh111]

Less likely to be hypothyroidism as you felt well initially with similar hormone levels and you haven't really benefitted from levothyroxine. It's possible you are getting symptoms from high antibody levels, there isn't strong evidence for this either.Have you been checked for anaemia? Measured iron or ferritin. This seems an obvious possibility. Also, a test for vitamin B12 deficiency.

[Dillydaffodil in reply to jimh111]

In the past I’ve been checked for anaemia, iron, ferritin, & B12. Nothing has been identified as needing replacement. Ferritin was borderline low just before coeliac diagnosis, but has improved.

I will certainly ask GP to check all these.

Many thanks for your help 🙂

[SlowDragon Administrator in reply to Dillydaffodil]

Nothing has been identified as needing replacement. Ferritin was borderline low just before coeliac diagnosis, but has improved.

what was last ferritin result

Always get actual results and ranges

[Dillydaffodil in reply to SlowDragon]

My last ferritin result (that I can access) was in October 2023 and was 68 (30-250) 17%, and is about where it has been following coeliac diagnosis. I have a yearly blood test followed by dietician appointment for coeliac disease. Ferritin, folate, B12 & Vit D are all tested and have always been reported as “normal”. Unfortunately I can’t access actual results and ranges as hospital blood tests do not seem to appear on the NHS app. I probably did ask at the time, but my record keeping hasn’t been good over the years and I have previously accepted normal as okay.

I think you are going to say my ferritin could be improved.

[SlowDragon Administrator in reply to Dillydaffodil]

Well ferritin ideally at least over 70 and many members find ferritin over 100 is better

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

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

[Dillydaffodil in reply to SlowDragon]

A really big thank you Slow dragon, for all of that helpful advice and links to interesting articles. 😀

[jimh111 in reply to Dillydaffodil]

This is a good ferritin result, above typical means BUT sometimes ferritin doesn't reflect iron status so it's worth investigating further or supplementing. I don't have much knowledge on iron other than what I've written here!

[Dillydaffodil in reply to jimh111]

Thanks, I’ll bear that in mind.

[humanbean]

Taken from your profile...

B12 600 (200-900)

Folate >24 (2-17)

Vit D 71 (75-200)

Started taking Amytriptyline (for neuropathic pain), 10mg/day for 3 days, then got severe palpitations and felt dreadful. Saw GP and stopped Amytryptiline, continued with thyroxine.

17days after last dose of Amytriptyline, heart racing, blood pressure high, visited casualty at 10pm. Up to that point I was still taking 50mg/ day Thyroxine 1 hr before breakfast .

Your comments on Amitriptyline are similar to the problems I had when I took it for pain. I developed tachycardia on Amitriptyline (heart rate up to 150 beats per minute ). I was also tried with Nortriptyline - same drug family, but more modern. It raised my heart rate up to 135 bpm. I haven't taken either drug since. Note that tachycardia is mentioned as one of the possible side effects on the Patient Information Leaflet for both drugs.

I ended up being prescribed beta blockers (Bisoprolol) because the tachycardia, once triggered, never went away completely, but at least they help.

Other common causes of fast heart rate and palpitations are low iron and/or ferritin (iron stores), and this was a major issue for me. Very low iron/ferritin can also cause chest pain. My doctor prescribed me two months of iron supplements. She was very reluctant to prescribe and I assumed I wouldn't get any more. I started testing (privately) and treating my own iron and ferritin (buying supplements without prescription from UK pharmacies), to raise my levels to optimal. It took 2 years to raise ferritin to mid-range, and 5 years after that to raise my serum iron to optimal.

Once I optimised my iron and ferritin my tolerance of thyroid hormones (particularly Levo) improved dramatically. Until then the only thing I could tolerate (poorly) was T3. I now do reasonably well on a combination of Levo and T3.

[Dillydaffodil in reply to humanbean]

Thank you for sharing your experience with Amitriptyline. It took ~6 months to get over my 3 doses, if that was the cause of my palpitations/fast heart rate. I was fortunate. Glad beta blockers are at least helping.

Your comments about iron & ferritin are interesting. I’m definitely going to request these are checked and I’m wondering if that may have contributed in the past.

There are so many interesting and helpful bits of info on this site. 😀

[humanbean]

Doctors know that thyroid disease damages the thyroid. But they almost always refuse to believe that the pituitary (which produces TSH) can also be damaged and produce too little TSH (Thyroid Stimulating Hormone) for various reasons. They claim that pituitary problems are "very rare" and almost never test it as a result - thus making pituitary problems to appear even more rare than they already think they are.

If TSH is produced in quantities that are too small the thyroid itself won't get sufficient stimulation to make it produce T4 and some T3.

If the thyroid is under-stimulated for a long time it can atrophy and actually become too small to ever produce adequate amounts of T4 and T3 for your needs.

I'm not saying this is your problem - I simply don't know - but it is something to be aware of.

.

Optimising nutrients can improve output of TSH and thyroid hormones in some people.

[Dillydaffodil in reply to humanbean]

Now that’s an interesting point about pituitary damage.

Yes I am coming to realise nutrient optimisation is important. 👍

[Tina_Maria]

We are all individuals that have different requirements for thyroid hormones, and we don't know what your individual hormone levels were before your symptoms started, but in general people feel much better, when their thyroid hormones are at least 60% through the range. If you think about how many processes in our bodies depend on thyroid hormones, having low thyroid hormones will most likely not cover all of those processes, hence the body will slow down and you will get symptoms.

And as humanbean has mentioned, if your pituitary feedback (TSH) is not working properly, your TSH may have not gone high enough in response to your lower thyroid hormone levels, so not signalling your thyroid to produce more.

Interestingly, symptoms of over-replacement can be very similar to under-replacement and I would speculate that your symptoms were related to the low hormone levels. And your GP stopping your thyroid hormone replacement with a TSH of over 5 is just irresponsible and shows a lack of knowledge. At the beginning of therapy, many people start feeling worse before they see an improvement. The thyroid will reduce your remaining thyroid hormone output, as it 'sees' the levothyroxine, hence you can end up with having less hormones available initially. Therefore it is imperative that you get tested after 6-8 weeks and the dose increased. And this needs to happen again after 6-8 weeks until you are on an optimal replacement dose.

Your nutrients are important as well. Some people here reported when their ferritin levels were low, they did not tolerate levothyroxine very well, but once their levels improved, so did their tolerance for thyroid medication. Something to bear in mind as well. All the nutrients work in conjunction with the thyroid hormones and can assist in converting the T4 to the active hormone T3.

At the beginning, it may take a while to get to your optimal levels, but try to bear with it and get checked out in regular intervals, as this will help you where you need to be quicker.

[Dillydaffodil in reply to Tina_Maria]

👍 That’s all very helpful, thank you Tina_Maria.

Your profile is very useful for me too, thanks.

[Tina_Maria in reply to Dillydaffodil]

I know it can all be overwhelming and frustrating, especially when you feel that nothing seems to be working, but try to persevere and stay with it and you will get through this 👍😉

[Dillydaffodil in reply to Tina_Maria]

Thanks, it’s been difficult try to get my mind around the way forward, but this forum has been invaluable.

👍Thanks to all on this forum🙂

[jgelliss]

My sympathy for you. First being on the right dose of thyroid meds and timing. For many years I too thought thyroid meds don't work well for me. After joining this wonderful forum I learned that vitamins play a large part in our thyroid meds to work well for us. Vitamin D/K2, Magnesium B12/Folate,Iron.

It made a Tremendous impact and a Great Game Changer.

Best wishes .

[Dillydaffodil in reply to jgelliss]

Thank you. This forum is certainly providing some useful pointers. I have been floundering for so many years, not knowing which way to turn.