No Levo Increase - try HRT

[Levo50]

Following my last post re bloods pasted below - I spoke to my Endo with the great recommendations from this site, he was appreciative but pointed out the TUK Community was doing great work and super supportive however, pointed out ‘not medically trained’ he was very polite and said would support my request to increase Levo to 100 per day from 100/75 alt days, however, I could tell this wasn’t what he would have done, so I explained I only want to make one change at a time - and although I’ve always been nervous of HRT here I am for 6 weeks giving it a try … I’m only 5 days in, I’m ok, had night sweats and feel extremely tired, so we will see! I’m on holiday for 7 days and still struggled to post, everything feels like hard work with and without HRT, my mood may have lifted slightly - any comments as always welcome

My results Feb / July 2021

TR = Through Range

Levo Dose Feb 61.25 / July 87.5

TSH (0.27-4.2) Feb 3.1. / July 0.08

Free T4 (12-22) Feb 13.7 (17% TR) / July 17.3 (53% TR)

Free T3 (3.1-6.8) Feb 4.03 (25.14% TR) / July 4.7 (43% TR)

Vitamin D (50-175) Feb 51.6 / July 77. (Medicated 800-1600 per day)

Vitamin B12 (37.5-187.5) Feb 65.7 / July 71

Folate (3.89-19.45) Feb 9.86 / July 6.1

Ferritin (13-150) Feb 207 / July 175

Thyroglobulin Antibodies (<115) Feb 22.6 / July 56.1

Thyroid Peroxidase Antibodies (<34) Feb 91.9 / July 128

CRP HS (0-<5) Feb 0.78 / July 1.7

[diogenes Remembering]

Perhaps you may educate the endocrinologist a little more, by stating that two advisers to TUK are both medically trained (1) a retired German-Australian professor of endocrinology with many papers to his name and (2) in the same way another active German doctor who is expert in thyroid function during nonthyroidal illness. The backup from these doctors provides a useful addition to TUK advice.

[Levo50 in reply to diogenes]

Thank you I certainly will - guess he doesn’t like me reporting with credible suggestions, after all I am here, like many others, having to be our own best advocate and this site has been incredible in this support!

[diogenes Remembering in reply to Levo50]

The names are 1) Professor Dr Rudolf Hoermann and 2) Dr Johannes W Dietrich of Bochum University in Germany. He can look those up for himself and also me (Dr J E Midgley) who invented the currently used FT4 and FT3 tests.

[shaws in reply to diogenes]

Thank you for your information diogenes and particularly for inventing the FT4 and FT3 tests. All of those named have done sterling work in fathoming out how best to diagnose/treat patients.

Why is it that GPs are so poorly trained in that mine told me my 'T4 was too low and T3 too high'. Yes doctor (I responded) I take T3 only, so T4 will be low and T3 a bit higher. His respnse 'but T3 converts to T4 !

[Levo50 in reply to shaws]

This is shocking ... even I know better just from my knowledge on TUK xxxx

[Levo50 in reply to diogenes]

diogenes thank you so much 😊

[SlowDragon Ambassador]

Vitamin D (50-175)

Feb 51.6

July 77. (Medicated 800-1600 per day)

Vitamin B12 (37.5-187.5)

Feb 65.7

July 71

Folate (3.89-19.45)

Feb 9.86

July 6.1

What vitamin supplements are you currently taking

Aiming to improve

Vitamin D to at least around 100nmol

1600iu daily might not be high enough dose

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Folate has gone down

B12 only just acceptable

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help maintain good B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Have you had coeliac blood test done

Are you now on strictly gluten free diet

[Levo50 in reply to SlowDragon]

Thank you SlowDragon I will digest and save this post as I am very methodical I like to change one thing at a time so I know what’s responsible for what - much appreciate your advice x

[FancyPants54]

Hi. It's great that you started HRT. I'm guessing a clueless doctor didn't bother explaining it much. What are you taking? A few people seem to have almost instant success with HRT. But most of us have to take it for months before we see much improvement. The positive changes are small and slow and creep up on us. Often it's not until we look back 3 months into treatment that we realise the good things that have happened. The first thing that normally goes is the sweats. And sleep improves.

Occasionally we can feel worse for a while and then better. Or we feel good for 3 months and then the symptoms return. So it is a good idea to have a review appointment at the 3 months mark and if symptoms have returned ask for a dose increase. If nothing much has improved, ask to try a different method and dosage. It's a bit like thyroid medication, in fact it's a lot like it, it takes a long time to settle in and give us the benefits and it needs tweaking.

[FancyPants54 in reply to FancyPants54]

Levo50 Also, menopausedoctor.co.uk is a wonderful web site full of up to date information and guidance all based around NICE guidelines and NHS prescribed HRT. Go and bookmark it and read through/listen to the wonderful selection of podcasts etc. It's worth it's weight in gold.

[Levo50 in reply to FancyPants54]

I certainly will thank you, I’ve always been nervous or starting HRT as 20 years ago my mum started it and then was diagnosed with pre cancerous cells and had to undergo a partial mastectomy! She’s fine now but this always sticks! My Endo believes it’s important we balance the risks with quality of life! Quite a hard one to swallow at 59 but I do get it x

[FancyPants54 in reply to Levo50]

There's so much to reassure you about the breast cancer risk on the menopause doctor web site. Loads about it and how it's been misinterpreted and mismanaged over the year year.

[Levo50 in reply to FancyPants54]

Thank you this was lovely to read especially as all I ever read about HRT are the risks! I am taking low dose Premique - does this mean mean anything to you? X

[FancyPants54 in reply to Levo50]

That must be a tablet? The least risk for oestrogen replacement is transdermal, through the skin. Patch, gel, spray. Tablets are the more old-style HRT now and have a slight risk of blood clot.

You will find great info about the types on that web site. I'd see how you go on it for a while and then if you aren't happy ask to swap to one of the skin products and using either a Marina coil or try Utrogestan for progesterone. Utrogestan is the only body identical progesterone we have at our disposal.

GPs are so behind the times with HRT. They think "lowest dose and least amount of time" but that's not right. You need enough to be of benefit and you can have it forever if you want too. So, again, see how you go, read that web site and then after a while go back and ask for something else if you don't think it's what you want to be on. I use the Lenzetto spray and a Mirena coil. I love the spray, so easy to use.

[Levo50 in reply to FancyPants54]

This is fantastic advice and so welcome I reallly didn’t expect this at all thank you very much x