Advice needed...

[Newmorningmercies]

After being on 125mcg Levo for 25 years it was reduced to 100mch last year as my GP said my blood results were indicating over-medicating.

I asked for an Endo referral and he carried out a blood test which showed the following...

TSH 7.01

T4 13

T3 3.6

He then advised my GP to increase Levo to 125mcg. He informed me that I am a good converter to T3 (I questioned whether I needed to be on a natural med rstger than synthetic Levo) but that I may start to feel better if my TSH is closer to 1.

I also have Primary Biliary Chirossis (stage 1) and take 750mcg of Ursodeoxycholic daily as well as vitamin D and Vitamin B12

Any advice would be greatly appreciated. I continue to feel lethargic all the time, experience low mood and have interrupted poor sleep.

[TiggerMe Ambassador]

Crikey yes you need an increase assuming these are based on the common 12-22 and 3.1-6.8 range... I'm not surprised you have never felt well on Levo as it looks like you have never been given enough of it and then to stop it for 6 weeks I'm thinking that is the action of an undermedicated mind!!! 😟

Your GP is a moron!! Thank goodness you saw a decent Endo 🤗

I've no idea what PBC does to your bodies ability to convert fT4 into useable fT3?

[GlowCoach Administrator]

Can you add the reference ranges for each test? This is important as they vary from lab to lab.

Obviously your TSH is far too high and should be at or below 1 where most people feel well.

How are you doing your blood tests?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the 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.

What are your latest blood results for ferritin, folate, B12 & D3?

[Newmorningmercies in reply to GlowCoach]

Nope. As per usual the Endos/GPs don't give the ranges. My GP literally has been saying "normal" after each blood test despite NEVER having my TSH near to 1

[Newmorningmercies in reply to GlowCoach]

My latest blood results with Medichecks were on 09/09/23

Ferritin:- 117.0 (13-150)

Folate-Serum:- 2.97 (>3.89)

B12:- 56.7 (37.5-150)

Vitamin D:- 128 ((50-200)

Yes I completely agree. I recently did get a printout of all my thyroid blood test results dating as far back as my GP could go with the time of the tests, results and ranges.

I will need to phone the hospital where I saw the Endo for the ranges used in his blood test. I was literally sent a letter with the results as I shared them with you. No reference ranges supplied although he did say that I would likely feel better if I get my TSH down to 1...

[GlowCoach Administrator in reply to Newmorningmercies]

Ferritin looks OK although will depend if you have any inflammation which can falsly raise it.

Vit D is good, you must be already supplementing.

Folate is deficient. If you show GP this results they may want to retest and then offer you 5mg folic acid.

B12 is too low. If you wanted to skip seeing the GP about folate you could start on a good active/methyl type B complex that would address both B12 & folate.

Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

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

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

Our thyroid hormone will not work well unless our vitamin levels are at OPTIMAL.

Ref thyroid you definitely need to be aiming for a TSH of 1 or just under with all vitamin levels at OPTIMAL.

Monitoring all these things yourself and advocating for dose increases is the only way you will get well.

[GlowCoach Administrator]

You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

My GP literally has been saying "normal" after each blood test despite NEVER having my TSH near to 1

This is extremely common to hear from GP's and why this group is so busy with unwell hypo people.

You're going to have to take charge of this yourself if you want to get well.

As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that  medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.

[Newmorningmercies in reply to GlowCoach]

I do have a Patient Access app to view my blood results but it only ever reads "normal". I will ask at my GP reception for my detailed info on the future so that I can properly monitor my own health. I do not trust GPS at all anymore sadly. They are at least 7 years behind on the medical literature/research and are merely drug pushers!

[arTistapple in reply to Newmorningmercies]

I have a well respected medical instruction manual used for teaching medical students about all things medical. Hypothyroid instruction is the same in this ‘respected’ manual as it is today! It’s the fifteenth edition and its dated 1987.

[SovietSong]

As Eeyore said all labs use different ranges but if the usual ranges of T4 (12-22) and T3 (3.1-6.8)apply you are way off with T4 about 10% and T3 13%.Your GP has had an absolute shocker.I’m starting to think they all have a chip in them programmed to say “in range”My GP dropped me from 150 to 100 and then when my tsh was 8.07 refused to increase as it wasn’t over 10!!

[Newmorningmercies in reply to SovietSong]

You're absolutely right, sadly! After each blood test I log in on the patient app and read "normal". No result, no reference ranges therefore no way to monitor my own health! What is "normal" to them is often not optimal for us the patient. A TSH of 8.07 is far too high! Not increasing your meds until it gets over 10 is utter madness

[Newmorningmercies in reply to SovietSong]

You're absolutely right, sadly! After each blood test I log in on the patient app and read "normal". No result, no reference ranges therefore no way to monitor my own health! What is "normal" to them is often not optimal for us the patient. A TSH of 8.07 is far too high! Not increasing your meds until it gets over 10 is utter madness

[GlowCoach Administrator in reply to Newmorningmercies]

You should be seeing something like this if you have access to your results. It sounds like you just have the consultation summary.

[PRJ20 in reply to GlowCoach]

Just flagging up that the name of your GP is on the bottom there GlowCoach

[GlowCoach Administrator in reply to Newmorningmercies]

NHS app results

App results