Recently diagnosed - help request to understand test results

[Slowrunner1208]

I was diagnosed with hypothyroidism in February and prescribed Levothyroxine 50mg per day. My February blood tests resulted in a diagnosis of Hashimoto's Disease and an increase to 100mg per day.

My GP told me that my latest test results (18.04.23) show that my thyroid is normal and I'm negative for rheumatoid arthritis.

All my results are below. I feel really confused - don't know what results really mean and doing lots of googling of terms and reading through the posts on here.

My main questions are Why do I still feel rubbish and how long before the medicine makes a difference? Do I need any additional tests? When might the utter exhaustion, joint / muscle pain, dry eyes, cold, thinning hair improve? And will I ever be able to lose the weight I've gained (size 12 in Jan and size 16, pushing 18 now?

Before this I was a fit and active 55yo, running 3-4 times a week and with an optimistic and hopeful outlook on life. I feel robbed of all this.

Thanks for any advice and suggestions on next steps!

Date Test Result Range Comments

03.02.23 TSH Level 64.00mu/L 0.3 - 4.5 diagnosed as Hypothyroid

03.02.23 Serum free T4 6.6 pmol/L 10.0 - 22.0

03.02.23 Serum C reactive protein level 33mg/L Outside reference range

03.02.23 Serum ferritin level 94 ug/L 94 ug/L Deficiency unlikely

21.03.23 TSH Level 17.30mu/L 0.3 - 4.5 Outside reference range

Dose increased to 100mg

21.03.23 Serum thyroid peroxidase antibody concentration 440 ku/L Outside reference range

Diagnosed with Hashimoto's Disease

21.03.23 Serum C reactive protein level 2mg/L

18.04.23 TSH Level 2.34mu/L 0.3 - 4.5 Suggests dose is right

18.04.23 Serum C reactive protein level 2mg/L

18.04.23 Serum total 25-hydroxy vitamin D level 52nmol/L Normal

18.04.23 Rheumatoid factor level negative

18.04.23 BIOPLEX ANTI-CCP ANTIBODY Normal

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.

So your TSH is like a messenger signal if you need more or less thyroid hormone. It can be used as a general picture of whats going on, BUT in many people it does not give a full picture at all. The NHS doesn't recognise this however.

Most people on Levothyroxine feel well with a TSH at or just under 1. Yours is a bit above that and shows that you would benefit from a dose increase. You will need to get a bit clued up to challenge your GP as most believe we are fine with a TSH just within or in the middle of the range. This simply is not true.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

You are legally entitled to a printed copy of your blood 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. The NHS tests are really inadequate to show how well replced we are. For a full assessment you need TSH, FT4 & FT3 which are really only available privately.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. 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/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test companies near you. onedaytests.com/products/ul...

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

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. 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.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

Ferritin should be around 90 - 100 for best use of thyroid hormone. Yours looks OK, BUT it can be falsely raised if you have inflammation which you do with a raised CRP level. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Could you ask your GP to test for B12 & folate levels?

You have a way to go to feel well and may need 1 or more dose increases + getting vitamins to optimal levels.

[Wua13262348 in reply to GlowCoach]

Hi, is this not Central Hypothyroidism? TSH 64, with an FT4 of 6.6 (10-22), 3/2/23. Then only TSH readings, no FT4 or FT3. Essential to have the FT4 and FT3, or no idea what is going on.

[SeasideSusie Remembering in reply to Wua13262348]

No. Central Hypothyroidism is where TSH is normal, low or minimally elevated with a low FT4. Such a high TSH with raised TPO antibodies = autoimmune hypothyroidism (Hashimoto's).

[Wua13262348 in reply to SeasideSusie]

Just when I think I'm getting the hang of this, I learn something new! I'll write that down. Boy, this is hard! Thanks for the clarificaton.

[SeasideSusie Remembering in reply to Wua13262348]

Some articles about CH:

bestpractice.bmj.com/topics...

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

endocrinologyadvisor.com/ho...

academic.oup.com/jcem/artic...

[tattybogle]

"18.04.23..... TSH Level 2.34 [0.3 - 4.5] Suggests dose is right"

Nope ....it only suggests your dose is "in the ball park" (as opposed to way out of bounds in the car park as it was when you were diagnosed) .

It does not suggest 'right for you' or optimal or as good as it could be .

2.34 is still a bit higher than the majority of healthy people have , 1 ish is much more common than 2 ish .. and once on levo, many patients need it a bit lower than 1 before they feel properly well again.

to quote one of the best responses i've seen on here (from serenfach i think) "does your GP play golf? .. ask him if he'd be happy with the ball somewhere in-range .. or if he'd prefer it to be in the hole"

This post has authoritative references advising GP's to keep TSH between 0.5 and 2 in patients on Levo (some say 0.4 to 2.5 , but the point being that TSH levels as low as 0.4 /0.5 /right at the bottom of the ref range/ ARE accepted as perfectly safe and ok if necessary) it also has a link to the graph showing TSH is usually around 1 in healthy people :

healthunlocked.com/thyroidu.... (my-list-of-references-recommending-gps-keep-tsh-lower-in-range)

This post explains why you may not feel ok yet even though your TSH is now 'normal' and why it is important they continue to measure fT4 until you feel well : healthunlocked.com/thyroidu... (explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy)

And in case you have a GP who is is terrified of the risks of TSH going below range by even a tiny amount, this one may come in useful in future : healthunlocked.com/thyroidu... (useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk)

[arTistapple]

All the advice you have been given here I agree with. However I did notice you have been on your increased dose of 100 mcg for just less than one month? When first diagnosed you tend to have your testing done in shorter time frames. However 100 mcg is a decent dose and it might be better to let it settle before asking for another increase just yet. I think you would benefit from testing again without a change to dosage in about another month? It’s an utter pain ‘waiting’ but there are good reasons for it, even if you are convinced the dosage is not quite right - right now. It’s often difficult to differentiate what’s going on re:better or worse, because the new hormones are making themselves ‘known’ to the body and the body needs time to adapt. If you are like many of us on the forum, we want to get the ‘show on the road’ but also most of us can attest to making mistakes and pushing too hard, so we can get back to getting on with life.

[Stourie]

it’s only 3 months since diagnosis so you’ll probably keep improving over the next few months. Levo isn’t a quick fix but can take a while so you’ll need to dig deep for your patience. Take care. Jo xx