I have Hashi but do I have CFS also?: Hi, I have... - Thyroid UK

Thyroid UK

137,572 members161,316 posts

I have Hashi but do I have CFS also?

janm3309 profile image
4 Replies

Hi, I have Hashimotos and am on 100gm levo these past 5 years, but I am gaining weight at an alarming rate and now 30+ kilos over what I should be. I'm also incredibly tired and lethargic, with joint and tendon aches......I wondered if this was CFS or just living alone under isolation? just to add I had high iron levels last blood test a year ago so am most likely not anaemic.

Written by
janm3309 profile image
janm3309
To view profiles and participate in discussions please or .
Read more about...
4 Replies
SeasideSusie profile image
SeasideSusieRemembering

janm3309

Your symptoms sound like you could be undermedicated, but for us to help you will need to post your current test results, with reference ranges. For a full picture we really need:

TSH

FT4

FT3

And because Hashi's can lead to low nutrient levels or deficiencies, and we need optimal levels for thyroid hormone to work properly, you also need:

Vit D

B12

Folate

Ferritin

humanbean profile image
humanbean

I had high iron levels

It really is important to know which iron-related measure is high, and also important to know how high is high?

Having a ferritin level of 160 when top of the range is 150 is a completely different kettle of fish to a ferritin level of 800 when top of the range is 150. The causes of these situations are likely to be entirely different too.

Another possibility is that serum iron could be high or low with slightly high ferritin. And knowing which situation you are in makes a difference to how iron issues are approached.

SlowDragon profile image
SlowDragonAdministrator

First step is to get full thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Also ....guidelines by weight might help push for dose increase

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

HealthyEmski profile image
HealthyEmski

Hi janm3309, I am in the same boat- have Hashi's but also wonder if I have ME/CFS. Did you find out more about your blood levels, especially iron? Cheers

You may also like...

Do i have hashi's?

elevated but not by much. I asked him ifni had hashimotos and he said i could but he's not sure....

Endo says I don't have hashi, gyne says I do :/

previous thyroid tests she said of course it is hashimoto. Asked me why I am not on medication...

I dont have Hashi's!

I had the phone call with the \\"Endo\\" just now. I am sure I will calm down in a minute... I...

Do I definitely have hashi's?

quite young?). I've been on 125mcg of levo for years and always just accepted what the doc said and...

Were you on The Pill, from 60-70's. and now have Hashi's or autoimmune disease. I was and do!

several thyroid and other symptoms, feeling cold, weight loss, hair loss, itchy and dry skin, no...