May I have thoughts please on latest test resul... - Thyroid UK

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May I have thoughts please on latest test results and gp’s suggestion

Noelnoel profile image
12 Replies

The numbers to the left of the brackets are current and numbers to the right of brackets are April 21

C reactive protein <4 (0 - 6) <4

Ferritin 73 (10 - 21) 76.9

Iron 23.6 (10 - 34) 20.8

Transferrin 2.84 (2.5 - 3.8) 3.36

% iron saturation 37 (16 - 50) 27

TSH 0.03 (0.35 - 5.5) 0.82

FT4 12.8 (10.5 - 21) 9.9

FT3 5.5 )3.5 - 6.5) 4.7

B12 661 (211 - 911) 507

Folate 9.91 (>5.38) 13.42

D3 is lately extremely high so will be tested next time

I wrote a more detailed post yesterday but had no response so I’ve précised it and given the bare bones in this

Both lots of results are with glandulars; the better, most recent ones from being on a higher dose

After a conversation with gp she suggested including levo (endo prescribed it months ago but I never took it) to raise T4 by introducing it gradually. The objective being to address sleep and weight issues

Week 1 Mon 50mcgs

Week 2 Mon 50mcgs Weds 50mcgs

Week 3 Mon 50mcgs Weds 50mcgs Fri 50mcgs

And if I feel well on this regime then to remain on week 3 until followup tests 6-8wks hence

I’m really grateful that she’s open to me remaining on glandulars and although she understands my concerns she says they’re unfounded for now and to wait and see. My concerns being: could that potentially worsen my insomnia because won’t Ft3 rise assuming that my T4 conversion ability is reasonable and isn’t 80% through the range high enough to be addressing weight problems? Should I go more slowly and maybe take a lower levo dose or possibly reduce glandular dosage? I’m so nervous because although I still have awful sleep problems the severity has recently improved and I’m starting to feel hopeful again.. Yes the weight is a problem and I desperately want to lose some but I don’t want to go back to being a sleep-deprived wreck

I’m asking on here because although she’s reassured me, is she correct?

I’ve also included nutrient and iron overload studies for comment please but can put those in separate post if preferred

Thank you

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helvella profile image
helvellaAdministrator

As this post has no replies, it appears in the list of unanswered posts/questions.

In order to prevent it appearing there forever, I am making this reply.

Noelnoel profile image
Noelnoel in reply tohelvella

Ok, thank you

I don´t understand the dosing regime. Are you supposed to take 50 mcg of levo a day for the first week, and then 50 mcg every other day as of week 2? That is usually not the way to do it...you start on 50 mcg and raise it by 25 mcg every 6-8 weeks until your TSH is around 1 or lower. Taking 50 mcg every other day equals 25 mcg daily which is a tiny dose. Or am I missing something?

Noelnoel profile image
Noelnoel

Hi PurpleCat71

It would be as follows:

Week 1 on Monday only, 50mcgs

Week 2 on Mon and Weds only, 50mcgs each day

Week 3 on Mon, Weds and Fri only, 50 mcgs each day

Week 4 and onwards if I feel well, Mon, Weds, Fri only, each and every week, 50mcgs each day

I’m clueless as to whether this is a good idea or not but I was really touched that she said: ok, let’s give this a go. You want to stay on metavive or similar, let’s try introducing levo and see what happens

She knows I’m open to experimentation within reason and it would seem, so is she

Now it may not help at all or I may feel worse but I won’t know till I try. If I start the regime, I’ll take up the mantra “go by how you feel” and will be re-testing after 6-8wks

This last couple of weeks as it happens, by re-introducing at night, the bovine one, I’m starting to lose tiny amounts of weight. I weigh each day on getting up and have found that after much angst and complaining about the stubborn weight gain and it’s refusal to budge, I’m losing a couple of ounces each day. I’m not going to hold my breath because this has happened many times before. I have a couple of weeks of weight loss then it stops and starts rising again. I am however hopeful though that this time it’s different because I’ve had about 11 consecutive days of weightloss

Here’s the grand total: 20oz. I know, hilarious but you know what’s it’s like. I’ve tried everything and nothing seems to reap lasting benefits in terms of weightloss and so any tiny amount gives me a bit of hope and where there’s hope, there’s a reason to be positive

I have to confess to being a bit erratic in my regimes and because I’m so forgetful I find myself trying all sorts of different things and ways on different days but re-starting my diary has helped since SeasideSusie suggested a way of taking my supplements and glandulars so I’ve stuck to that rigidly, which begs a thought: she suggested I take my glandular on an empty stomach…perhaps that’s what’s making the difference. I take it first thing then wait at least an hour before breakfast and I try to do the same with the lunchtime dose

As for introducing levo,I haven’t made up my mind yet. I’m going to see how this new way goes. I’ll give it another month maybe …

helvella profile image
helvellaAdministrator in reply toNoelnoel

In my book, it seems a mad idea.

I prefer having the same dose every day - for example, 112.5 every day rather than 100 and 125 alternating. Despite the difference being only the 12.5 microgram (12.5%) increase.

If you take 50 every other day, that is a whacking great 50 microgram difference - four times as large a difference as I prefer to avoid!

Why on earth is your GP suggesting this? And, if it really were a good idea, why not prescribe 25 microgram tablets and make it even more gentle? Or even split tablets to graduate dose changes down to 12.5 micrograms?

Even if the proposed plan works, why choose it over what would appear a safer and softer approach?

Noelnoel profile image
Noelnoel in reply tohelvella

hellvella, as I said, I’m clueless as far as levo is concerned. My experience is with metavive but now that I see it the way you’ve explained it, in black and white, it looks slightly scary!

helvella profile image
helvellaAdministrator in reply toNoelnoel

Have a look at Fine Dose Adjustment in this document:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Currently has the following sections:

Abbreviations and Acronyms

Alerts Amino Acids Antibodies Elements

Famous People with Thyroid Disease

Fine Dose Adjustment

Hydration: Anhydrous vs. Pentahydrate

Human Hormones

Iodine Content of Thyroid Hormones

Medicine Classifications

Pathology Handbooks

Pharma Contacts

Pharmacy Locations

Prescription Latin

Serious Shortage Protocol (SSP)

Tests (Summary)

Tests – LabTestsOnline

Thyroid Binding Proteins

Thyroid Diseases, Disorders and Syndromes

Thyroid Hormones

Thyroid Hormone Ratios

Thyroid Medicines

Units – Grams, Milligrams and Micrograms

Vitamins X-codes

Yellow Card Reports

Not everything is in this one document - my major medicines document is still separate!

dropbox.com/s/vp5ct1cwc03bl...

Noelnoel profile image
Noelnoel in reply tohelvella

Thank you, read the section

So, given that I would prefer to go as slowly as it’s beneficial to go, what would be your recommendation for quantity and frequency.

As stated, at the moment I’m experimenting with adding a bovine metavive-type glandular in the evening and noticing some subtle positive changes. I believe this is because of the different composition between the porcine and bovine. I’ve added just half a capsule and I’m coping with that. I seem to be really sensitive to changes when experimenting with glandulars and if I were to take half a porcine capsule at night I would get heart irregularities, sweating, anxiety

To be fair I’m unsure whether it’s the nucleotides that cause the ill-effects (I suspect so as I had no such problems before the change of formula) and at the moment I’m trying T-Life which is porcine without nucleotides. I may try swapping the bovine for the T-Life l at some point if I feel I need nudge things along and eventually start using levo if I find that after all, things don’t work out with metavive etc

Anyway, sorry for the ramble. The upshot is this:

I would want to take levo as little as possible and as infrequently as possible with a view to increasing dose/frequency/both should it be required

helvella profile image
helvellaAdministrator in reply toNoelnoel

I suspect I'd go for 25 micrograms every other day.

That would be a dip your toe in the water starting regime. Too little (e.g. 12.5 every other day) is likely too low to expect any definite effect.

Going up as and when you feel comfortable. Have a schedule in mind, maybe expect to increase a little every week, but don't feel bound to stick to it. The feedback of how you actually feel is far more important than a guess.

Noelnoel profile image
Noelnoel in reply tohelvella

Thank you

And timings? At the moment it’s three separate doses of metavive-type glandular as follows:

At least one hour before breakfast

Before lunch if I can manage it but if not during or after

And finally, somewhere between 8 and 10pm

I’m not particularly bothered when I take it but what I want to avoid at all cost is, it affecting sleep. I already have horrendous sleep issues which have fractionally improved very recently. It’s still pretty awful though

helvella profile image
helvellaAdministrator in reply toNoelnoel

I find that difficult to answer.

My personal choice was bed-time dosing of levothyroxine. And found that improved my sleep considerably. But this is not the universal experience.

Noelnoel profile image
Noelnoel in reply tohelvella

I suspected you’d say that but thank you anyway for your very valued advice

I think I’ll opt for mornings and see. Not brave enough to try at bedtime but who knows

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