Hello. I had half my thyroid removed several years ago and was on 50mg levo for a few years. Symptoms suggested an increase was needed and although reluctant, GP agreed. Most recent tests show TSH is now 0.96 (0.55 - 4.78) and has come back marked as “normal” but I wonder if it’s now too low. They didn’t test T3 or T4 and I doubt they’d agree to.
B12 is slightly high but I’m on supplements - 914 (180 - 900); folate 19.6 (>3), ferritin 30 (15 - 300) which I know needs to be higher. I’m on 420mg ferrous fumarate a day which doesn’t seem to be helping.
Curiously under the FBC my red blood cell distribution width is marked with ! as it’s 15% (11.0 - 14.8). No clue what this means.
The TSH does not cause symptoms - what causes symptoms of hypothyroidism is too low a level of T3 - and without a T3 and T4 drawn at the same time, from the same blood sample, it's impossible to know how well you are converting the T4 into T3 - which is the active hormone that runs your body including your metabolism.
I see you are already taking iron tablets so was there a full investigation and internal investigations or at least and iron panel run - before you started supplementing ?
I'm not an expert on how to read an iron panel but there are forum members who can for you if you care to share and am guessing that the red blood cell distribution may also have a bearing here.
Many of the symptoms you detail can be because of your low ferritin level :
Everywhere I researched suggested that no thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels -
and for ferritin - for thyroid hormone to work well - ferritin needs to be at least over 70 :
I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++) and vitamin D at around 125.
However it could also be that with only half a thyroid and taking just 50 mcg T4 - you need this dose increased - but we can't really tell this from just a TSH reading.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 x more powerful than T4 :
Thank you, that’s really helpful. Sorry, I forgot to add that the GP agreed to increase my levo to 75mg about 18 months ago, so I’m concerned that this is now too high and may be causing other problems (weight gain).
I’m seeing the nurse again tomorrow and will ask about the iron. I also get a lot of stomach pain, they sent me for an endoscopy which revealed a hiatus hernia but no other reasons for the pain or why I wouldn’t be absorbing iron.
Honestly this fatigue, hair loss, headaches, etc has been going on for so many years I’m almost just used to it now. Sigh.
The weight gain is generally a symptom of hypothyroidism - and too low a level of T3 :
Despite a dose increase in T4 - until your ferritin improves to at least over 70 -
your ability to utilise and convert well the T4 Levothyroxine into T3 is likely compromised.
You need a full thyroid function test to include a Free T3 and Free T4 blood test - and it should be a fasting early morning blood draw - with around a 24 hour window from your last dose of T4 so if you you take your T4 in the mornings - take the T4 x 75 mcg after the blood draw.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 3-5 days before testing
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Do you always get same brand levothyroxine at each prescription
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Hi, I too had half my thyroid removed (2 years ago). Youve already have some great informative replies, but you mentioned stomach pain, and I just wanted to let you know that whenever I am in need of a dose increase, the main symptom I get is stomach pain, and constant nausea, but when the increased dose kicks in, my stomach returns to normal. Every time like magic. I too was sent for an endoscopy with the results being gastritis. I’ve learned that a lack of thyroid hormones causes low stomach acid which causes my symptoms. You say you have a hiatus hernia and I’ve read that this can cause acid reflux and nausea etc, As soon as Acid Reflux is mentioned most gps and endos immediately prescribe PPI’s, which I refuse because they are designed to lower stomach acid even further.
I hope you are granted your request for T3 and T4 and iron blood testing via your GP. I’ve learned from being a member of this group that you need to be proactive to a certain extent when you have hypothyroidism, in my case by having regular private blood tests as the NHS Lab in my area refuse to test T3 levels. Always post your results on here for great advice. And learn as much as you can about the condition by reading posts and replies on this forum.
Lots of us have also paid to see a private Endocrinologist rather than rely on the NHS, but these appointments cost around £250 each visit, and you need to research those in your area. You don’t want to go to one whose specialty is diabetes for instance.
Thanks so much SlowDragon and Alternatively for your super helpful responses - so much info there to read and digest. I’m very grateful.
I saw the nurse practitioner again this morning and she agreed to the full iron panel and T3 & T4 tests. Also a FIT test. My hormones show the HRT isn’t working effectively either so after results are back, we also need to address that. She gave me confidence that she will help me get to the bottom of the matter, but I know I also need to arm myself with as much info as I can. Thanks again.
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