My Crib on how I got to optimal dose of Levo - Not Gospel - just example take what you will from it.

[Charlie-Farley]

I've already posted my spreadsheet results on another post and a post with the formulas exposed for those who might find it useful - see my profile previous posts can be accessed if you want to see them.

This post is about the interpretations and information I shared with my GPs regarding my symptoms. I evaluated my overall situation and related results to symptoms what I needed to happen next - I did not grovel I was emphatic. Keep in mind, I had already got a mark against my name for taking no do-da and knowing more than the GP I spoke to when I needed an increase from 75ug to 100ug - I'm really hoping after our locking of horns she was sufficiently motivated to get a little more up to speed on thyroid issues🙏

These are the two references I cited in every single report, communication.

References

The normal range: it is not normal and it is not a range, Whyte MB, Kelly P. Postgrad Med J 2018;94:613–616.

Pulse Magazine 1st June 2010 Dr Anthony Toft answers GP Dr Pam Brown’s questions on thyroiditis, thyroid eye disease and thyroxine dosing.

Just as well, as I dealth with a different GP each time.

This is the text of the cover note I sent with a print out of my spreadsheet results of Thyroid (FT3, FT4, Anitbodies, cortisol, etc .... oh and TSH and Vitamins for an increase from 100ug to 125 ug.

FAO Dr W

After having levothyroxine upped to 100ug felt absolutely great for a good while then symptoms slowly returned.

Currently brain fog, fatigue, periods of low mood (not low when dose upped) and other previously reported symptoms.

Not driving (slowed reactions), needing to nap for 3 hours every afternoon then only able to do a couple hours light activity after that.

Hard work to keep on top of things. I’ve complied all results, normalised to % through range (latest results at the bottom of each table) which make for interesting reading. I would be interested in your perspective.

RED WHALE - GP Update suggests dosing by weight 1.6ug per kg. Perhaps an over simplification, but does kind of point to the fact it is reasonable to assume someone 5ft nothing and 6st 7lbs wet through probably needs less levothyroxine than someone 5ft 8 inches and 15 stone. Many other factors to consider.

I am requesting an upping of my current dose to 125ug with a view to reviewing in 6 to 8 weeks dependent on return of symptoms (or perhaps not?!).

Many thanks

*******Just a Note here the REDWHALE update is essentially NHS guidelines.

Next was the upping from 125ug to 150ug!

I couldn't find the original document - probably on a data bar or my external hard drive - so I've taken a photo of a printed copy from my hypo file.

*********See Photo at the TOP of post

My final thanks but no thanks see you around below as a response to being summoned on September 2021 by the Original GP who grossly undermedicated me. My review date has since been modified to September 2023

17/11/21

Hi Dr W

Tried phoning surgery a few times always 15 calls behind – its a busy time. So here is an Update

Since the levothyroxine increase to 150ug by Dr C, I can advise I am symptom free and feeling better than I have in years. As you will see from other info provided For Dr A and Dr C, being in range does not mean optimal. You can be hypo at the bottom of the range and optimal at the top. For those poor people who have the rarer tissue resistance hypothyroidism where the body has difficulty in utilising Thyroxine the range is of little use.

I do have some physical problems which I attribute to loss of muscle tone when I was severely symptomatic in late Dec 2020 and into January 2021 and the following few months as I fluctuated between the relief of a dose increase and hypo symptoms whilst getting to the point I am now. I will get bloods done in a few months time when my system settles. Vitamins and Thyroid.

I’m seeing a specialist privately to sort the physical symptoms – time to get properly fit again!

I noted between each dose increase, the length of time it took to feel the benefits shortened and the period of wellness extended. With this in mind, I think it is still to early to categorically state I’m on full replacement dose, but I am optimistic.

I did find the omeprazole to have little benefit and apparently lots of people with hypothyroidism suffer low, not high stomach acid,. The confounding factor is, in terms of symptoms, they present as the same. That might also explain why my vitamin levels were low. I have been reading around and apparently vitamins are especially important. If the vitamins are not higher in range it can affect the bodies conversion of T4 to FT3.

With regards to heartburn, going gluten-free, avoiding dairy and the combinations of food I eat have come up with some interesting results.

Gluten-free helps with constipation (as does being adequately medicated). Apple crumble, even the gluten-free version is the perfect storm for heartburn. This lead me to understand sugar, carbs and fat (which any crumble is) combined pretty much guarantee heartburn. Combinations of food are the main factor.

I tested this to the limit the other day – had a chicken Jalfrazi with veg pilau and no heartburn! |I think the going gluten-free has been pivotal in my recovery. I did not expect any real effect from this measure. This has been strictly gluten-free – half measures are ineffectual.

Hope this update helps

Focus on the folk who need you guys – I’m hoping to be of little bother going forward.

Best Wishes

Charlie-Farley