Groundhog Year

[tzracer]

Another year passes and the annual blood test causes its usual issues.

I did get retested because of an abnormal result

serum calcium concentration 2.19 mmol/L (2.20-2.60)

They did the test uncuffed and I crept into range.

TSH <0.01miu/L (0.49 - 5.23) like this since starting Liothyronine in 2017

T4 16.5 pmol/L (11.5 - 22.7)

T3 requested but lab refusal (despite abnormal TSH) would expect it to be close to the 2021 result of 6.6 pmol/L (3.1 - 6.8)

First time ever I got these 4 done at the same time.

Ferretin 124 ug/L (22-322) 124 ug/L in 2015 and 277 ug/L in 2017

Vitamin D 69 nmol/L (50-250) was 64 nmol/l in 2017 which was abnormal back then.

I was suprised at this as I have been supplementing 5000iu daily throughout the year (a sublingual tablet) so was worried about it being high!

B12 1301 ng/L (172 - 1162) have been supplementing

Folate 11.6 ug/L (>5.4) was 7.4 ug/L in 2017

So the GP has issues the 125mcg levo prescription and they have upped my vit D prescription from 800iu daily to 5600iu twice a week (I was taking my own vit d 5000iu supp)

So last time I dropped to 125mcg I wrote this to the Endo

__

I have spoken to my GP practice and they don’t want to retest thyroid bloods after the drop in liothyronine back in November. I spoke to them about my unresolved symptoms and they have asked me to refer back to you. As has happened previously the following symptoms have increased.

Continuous:

Fatigue

Constipation

Weight Loss (gradual not sudden)

Tinnitus

Poor sleep

Easily upset

Loss of libido

Mental sluggishness

The below symptoms have never resolved:

Cold extremities

Lack of co-ordination in hands

Difficulty swallowing

Haemorrhoids

Abdominal distension/flatulence

Eyebrow loss (outer third)

Dry Skin

Joint stiffness

Poor Memory

Poor concentration

Loss of drive

Easily upset

Mood changes

Depression

Lack of confidence

__

I am weary mentally and physically and have little fight in me at the moment.

I think I would really like to try NDT, but there is no chance of that with current practioners, its also blacklisted by my CCG. Plus there is the cost aspect. There is no way I can afford private prescription of Armour and the price of Thyroid S isn't particularly cheap.

I have been doing some reading and would trialing Matavive IV give me some indication of wether NDT is the way to go? or just try one order of Thyroid S.

Given my current dosing am I likely to need 2.5-3 grains so bottle could last over 4 months, hopefully enough time to know if its improving things.

[crimple]

tzracer, have you ever had antibodies tested? Do you follow a Glutenr free diet?

[tzracer in reply to crimple]

Thanks and sorry for the late reply, I have tested positive for antibodies and no, I haven't given gluten free a serious go, but I'm going too.

[Lovecake]

The fixation of the suppressed TSH is really wearing.

I really do understand if the person is on T4 mono and the FT4 is at top or over range, but not when T3 is prescribed.

I’m sorry, I don’t know the answers to your questions. I’d like to try NDT myself, but like you, can’t afford it, worried about supply, and quite frankly not up to a fight with my (private) endo.

It seems to me you are not over medicated. Have you tried gf, dairy and soy free? Any set diets that exclude nightshades etc? Clutching at straws here but really hope you get some answers soon

[tzracer in reply to Lovecake]

Thanks for your reply, I'm really only using the GP for bloodtests and hold no hope in them for a solution, the forum is a far superior source of information. The GP wants a coeliac test done in 6-8weeks when they retest thyroid after reduction. I may give gluten free a propper go after that. I wrote this letter to Endo last year and didn't get a reply, but the 150 Levo was allowed.

my letter to endo

[Lovecake in reply to tzracer]

I was tested for coeliac when I first saw my private endo. NHS endo found the vitD deficiency and GP found the folate deficiency. B12 not fab, but not low enough to bother them. I supplement all myself with the advice from the fab people on here.

I might have to pinch part of your letter if they ask me to reduce any of my doses, but quite frankly I would doubt it. They tried that last year and I was really poorly. Like I’d hit a brick wall. 😣

GF does help a little, but still makes no difference to my TSH. And that’s all they’re bothered about.

Don’t give up though - you will find something that suits you and helps you to feel much better ☺️🧁

[Charlie-Farley]

Hi tzracer

Coeliac will be picked up by test, but intolerance won’t. I went strictly gluten-free free two years ago now and resolved/improved many symptoms - along with getting onto a full replacement dose.

Heartburn and constipation being the two main ones. Balanced out energy and by virtue of going gluten-free many prepared (rubbish) was now out of reach to me. I started preparing my own food.

I think it’s utterly worth it and by not wasting food and being more conscious about what we are eating (reducing waste) it is no more expensive.

[tzracer in reply to Charlie-Farley]

Thanks, sorry I meant to reply sooner. I think th gp is going to do coeliac next round of blood tests.Totally agree, I try to eat home prepared food as much as possible, I do have the odd ready meal.

I cured my heartburn issues with homemade kefir and took hcl with main meal. (I had done the burp test an nothing happened) I still think I have gut issues, it's a work in progress.

I'm reading an interesting book about uric acid, I've only ever been tested once and my levels were top of the range. Which isn't good, it only seems to get a mention in relation to gout. But there is so much more going on in the background.

Glad you found the gluten free improved things.

[Charlie-Farley in reply to tzracer]

Hi! life hectic - I never expect immediate repies. 🤗 Sounds like you are getting top of things 😊👍

One thing I have noticed is high carb, high fat, high sugar in combination will definitely give me heartburn, even if it’s a gluten-free combination. So my beloved gluten-free apple crumble has had to be kicked into touch. I’m sure I had leaky gut at the start of this journey. I don’t think I have now and my joints don’t play up as much. I believe a combination of inflammation from leaky gut and undiagnosed hypothyroidism (then under medication for 6 months after diagnosis) was making me feel very poorly. It has taken a while, but I feel so much better than I used to better than I have for years, and I still think there is room for improvement!

[tzracer in reply to Charlie-Farley]

Good to hear your healing is going well.Yes, I have to walk past the yellow sticker donuts in tesco, the heartburn isn't worth it😁

I've read more of this book and going gluten free is part of the recovery process. So going to give it a go.