Help with test results: Hi I am new to posting... - Thyroid UK

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Help with test results

feegee26 profile image
13 Replies

Hi

I am new to posting. Would it be possible to get advice on my results. I was put on levothyroxine 2 years ago and have struggled since with my health excess weight gain(7stone) which I can’t loose, exhaustion, dizzy spells, pounding or pressure in my head when I stand up, sore joints and really bad swelling in face round eyes, nose, mouth, hands, knees, ankles & feet. I have seen specialists for swelling they don’t know and have put me on prescription anti histimines which are not working.

I am currently taking 150mg daily. Do I need to increase levothyroxine or am I not converting T3 to T4?

Just to note I was also diagnosed a year ago with Pernicious anemia my jags were stopped during covid so I have been SI. That’s why I think b12 levels fine.

Any advice would be very much appreciated

Thank you 😊

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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

Feegee26

It is unusual to have a high FT4 with a high TSH.

When did you take your last dose of Levo before the test?

What time did you take the test?

Did you have coffee before the test?

Do you take a B Complex or Biotin, if so did you leave this off for 7 days before the test?

Your Vit D and Ferritin are low, do you take any supplements?

feegee26 profile image
feegee26 in reply toSeasideSusie

Thanks for your quick reply

I read all the advice here so I did it right - it was over 24hours since my last dose. I take my Levo between 2-3am as I wake up for the loo like clockwork and take it then. I did my test at 7am and had nothing but a sip of water before it.

I don’t take any other supplements just my b12 jag.

SeasideSusie profile image
SeasideSusieRemembering in reply tofeegee26

Feegee26

Did you have an infection at the time or in the 8 weeks before the test?

Your CRP is raised and this can be a sign of infection or inflammation.

Have you tested antibodies before and have they ever been raised?

feegee26 profile image
feegee26 in reply toSeasideSusie

Hi

No I have not had an infection lately but have never felt well for last 2 years as most days joints hurt and feel sore & fatigued but have been tested for arthritis and have been tested for Cushing.

I have never had my antibodies tested they only test my tsh at doctors.

Thanks

SlowDragon profile image
SlowDragonAmbassador in reply tofeegee26

Sore joints likely due to low vitamin D

Gluten intolerance is common with autoimmune thyroid. You might consider trying strictly gluten free diet

But get coeliac blood test first, just to rule it out

SlowDragon profile image
SlowDragonAmbassador

Pernicious Anaemia is autoimmune, it’s likely, despite negative antibodies, that your hypothyroidism is autoimmune too

Have you had ultrasound scan of thyroid?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Obviously you need to improve vitamin levels. This will help improve your very poor conversion of Ft4 to Ft3

Low vitamin D obviously needs improving and GP should prescribe 1600iu everyday for 6 months, though you may be better self supplementing at higher rate

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

SlowDragon profile image
SlowDragonAmbassador

Low folate

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

This is frequently recommended when have B12 injections

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

feegee26 profile image
feegee26

Thank you for your advice 😊

I have never had an ultrasound of thyroid. I will try boosting my vitamins to see if that helps.

linda96 profile image
linda96

Hiya,

Consider lymphodema for the swelling.

Also you could do with eGFR and cholesterol being tested. Also ESR.

Can you arrange to get these done and add to this post please?

Face swelling - does you face go red at all?

Do you suffer with pains more one side of your body than the other?

Iv had this, and over time gained 6 stone.

Please let us know the results.

Thank you

Batty1 profile image
Batty1 in reply tolinda96

Is their something about swollen red face?

feegee26 profile image
feegee26 in reply tolinda96

Thanks for your feedback yes my face goes red but was told it was rosacea and photosensitivity. I get pains but not just one side affects all over.

I will ask doctor

Thanks

humanbean profile image
humanbean

One possible reason for high TSH and high Free T4 is discussed in this thread. I have no idea whether the condition discussed has any relevance to you :

healthunlocked.com/thyroidu...

feegee26 profile image
feegee26 in reply tohumanbean

Thank for this really interesting.

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