Advice for Endo visit please

[EnglishPatient52]

Hi. I have an appointment with a new NHS Endo on Monday and would appreciate any advice re my latest test results please.I have posted previously about having a total thyroidectomy back in May and waiting for a surgical follow up, which eventually took place two weeks ago. At that visit my surgeon requested bloods and the results were as follows:

TSH - 0.01

T4 - 32.6 (range 11.3 to 21.6)

T3 - 4.8 (range 3.1 to 6.8)

I have been on 100mcg of T4 since the surgery and am assuming that the Endo will use these numbers as the basis for future treatment. However, the bloods were taken at my surgical appt which was at 5pm and I had taken T4 in the morning and eaten during the day. This is of course not in line with the recommendations for testing suggested here, and therefore I wonder if these numbers are not useful. If so, should I ask for the tests to be repeated before agreeing to any dosing change?

By the way, in terms of new symptoms on this current dose, I'm suffering from constipation and extremely dry skin which is prone to breaking down at pressure points. I'm also having very bad reflux daily (I do have a hiatus hernia but it has been under control until the last three months).

Thank you.

[Regenallotment Ambassador]

hi

Yes you are quite right a test result at 5pm won’t be the most helpful. As you know 24hrs from last Levo is recommended here. There is a super graph somewhere that shows the daily cycle of TSH, FT4 and FT3. I’ll try and find it and link it in an edit.

Your symptoms suggest under replacement but… over replacement can give similar symptoms for some. It’s a fine balance. You will only know following a consistent testing protocol and keeping symptom diary.

Hypothyroidism leads to LOW stomach acid and poor uptake of nutrients and poor absorption of Levothyroxine.

Taking a PPI will make this worse.

From personal experience my reflux symptoms cleared up with raising FT3, and raising stomach acid with apple cider vinegar before meals and betaine with pepsin tablets.

How are your vitamin levels? Have you tested B12 folate ferritin and D recently? 🌱

[EnglishPatient52 in reply to Regenallotment]

Thank you for your quick reply.I forgot to mention that I also frequently feel cold despite the prevailing temperature. I think this is also a hypo symptom.

I hadn't considered that the reflux could be due to low stomach acid caused by being hypo, as I was previously bring treated for being hyper prior to my surgery. Would you suggest that I try your recommendations? (Although I wouldn't want to risk worsening the symptoms as I'm already feeling pretty grim with it!)

Re vitamin levels, I haven't been tested lately but I currently have prescriptions for daily vitamin D 800 iu and a B12 injection every three months for pernicious anaemia.

Thank you.

[Regenallotment Ambassador in reply to EnglishPatient52]

Link to useful post about timings healthunlocked.com/thyroidu...

[Regenallotment Ambassador in reply to EnglishPatient52]

I don’t know if you also joined the PA society here but this post from @technoid helps explain more about the low stomach acid situation healthunlocked.com/pasoc/po...

[Regenallotment Ambassador in reply to EnglishPatient52]

A link to a post I wrote after ENT follow up.

Lots of tips for reducing symptoms healthunlocked.com/thyroidu...

[Regenallotment Ambassador in reply to EnglishPatient52]

Oh and listening to a US Thyroid Answers podcast, Dr Eric Balcavage talks about FT3 levels having an impact on the control of the stomach openings (ie hiatus hernia). So hopefully this should improve for you with optimal hormone replacement.

[McPammy]

I would say your T4 Levothyroxine is way too high. Your TSH is almost undetectable. Can I ask if your thyroid removal was due to thyroid cancer? If so, then you must have a suppressed TSH meaning high level of T4 Levothyroxine, to stop cancer returning. If not cancer then you need to aim for a TSH around 1.00-2.00. Which means keeping your T4 Levothyroxine in range. Over or under medication you will get symptoms and often they are very similar. I’d say your symptoms are over medication and your test results prove that. Doesn’t matter really when you took your meds and when you did the bloods. It a snap shot in time of your levels. But TSH looks longer over a few days and it’s clearly saying you’re on too much levothyroxine.

You could do with checking your vitamins too. Vitamin D, B12, folate and ferritin are really important to be optimal in their ranges. Do you monitor these.? Ask your gp to check them if they refuse, which they shouldn’t, you can check privately on line through Monitor My Health site. If any are low starting supplementing.

[pennyannie]

Hello again :

Irrespective of when these blood tests were taken - it is obvious that you are not converting well the T4 into T3 -

which is the active hormone that runs your body - much like fuel runs a car - and your T3 much too low and causing you symptoms of hypothyroidism.

I did reply in some length previously - but didn't receive a reply -

the same issues apply now - maybe reread your first post replies from 2 months ago ?

Just press your Profile Icon - sitting on this page - alongside My Hub - Chat - Post - Alerts - and menu sections - and this will take you back to everything you have ever written and all your replies.

[SlowDragon Administrator]

Here’s your post from 2 months ago

healthunlocked.com/thyroidu...

Presumably you got vitamin levels tested by now

What was vitamin D result

Have you increased dose of vitamin D

Are you taking magnesium daily

Are you now taking daily vitamin B complex

Have you had coeliac blood test done BEFORE trialing strictly gluten free diet

Recent thyroid Test obviously pretty useless

Recommend you get full thyroid and vitamin testing done correctly

Free T3 (fT3) 4.8 pmol/L (3.1 - 6.8) 

Ft3 only 45.9% through range

This will be causing hypo symptoms

On a PPI you will have low vitamin levels

On levothyroxine we MUST have good vitamin levels for good conversion of Ft4 (levothyroxine)to Ft3 (active hormone)

Low Ft3 and PPI combined will cause low vitamin levels

Come back with new post once you get results

[jgelliss]

There is a very important point I would like to make from my personal experiences. I don't fall into the range the labs provide. I need higher doses to feel my best. If I was dosed by the FT3 and FT4 and TSH. I would have all sorts of problems. Muscle and joint pains insomnia palpitations high BP, UTI, catch colds easily, weight gain,dry skin etc.Labs are only results of the time they take it. Cellular results can not be tested but you feel it. I learned that for me personally Cellular over labs work for me Best. In addition vitamin D, Iron/Ferritin, and B-12 are very important components to help the thyroid hormones work well for us.

Best Wishes.