advice with results pls. : Hi. thyroid removed... - Thyroid UK

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advice with results pls.

PurpleKitty111 profile image
9 Replies

Hi.

thyroid removed over a year ago. Have been cleaning up my diet and adding supplements (vitD, magnesium, B12, brazil nuts, iron) and still feel exhausted and like a worn out wind up toy.

Also recently diagnosed pre diabetic.

Just had my latest thyroid panel back and all seems good except a rather low looking TSH, (0.12)

I’m thinking gp will want to lower my dose as he mentioned it when previous level came in at 0.24.

I’ve seen gp’s prefer TSH to be at least 0.4+ and I’m wondering what should I be doing next?

(Past results pic for ref)

Thanks in advance for your help.

Helen.

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9 Replies
waveylines profile image
waveylines

Sorry to hear you feel awful. Poor you.

If the GP mentions TSH, point out that your thyroid hormones are in range and thats whats important. TSH isn't relevant as you had your thyroid removed.

Have you checked the other Co factors: B12, vit D, ferritin & folate. We need these to be optimal, not just in range.

You GP can do blood tests for these.

PurpleKitty111 profile image
PurpleKitty111 in reply towaveylines

Hi,

Vits were supposed to have been done at same time but for some reason weren’t on blood request form. I have a phonecall appt with gp next week so will ask if he will sort one.

Last time

My VitD and B12 were on the low side. Hoping supplementation has increased my levels. Certainly doesn’t feel like it! Still recovering from getting Bell’s Palsy a couple of months ago so I guess that’s not helping with the fatigue.

Thanks for advice waveylines.

waveylines profile image
waveylines in reply toPurpleKitty111

Sorry to hear this purple Kitty. If you haven't already it's worth going onto B12d.org website as they have an online assessment tool that's will assess next steps. When I did it it picked up symptoms that I didn't know were related. Supplements didn't work great for me so ended up on injections. I do them myself. Optimising my B12 (it was 235 so low in range) made a big difference to me.

It is difficult to distinguish b12 deficient from thyroid but a big clue is neurogocal symptoms, don't know if bells palsy falls into this but certainly numbness, tingling, pins and needles, blurred double vision, sense of something crawling on you, tremors, feeling weak, for example.

Hang in there...

PurpleKitty111 profile image
PurpleKitty111 in reply towaveylines

thank you. Just been diagnosed diabetic so not sure if the neurological issues (feet and hands etc) fall into that rather than thyroid/ vits.

Thanks for the referral though. I’ll look into that too.

Wishing you better too.

X

SlowDragon profile image
SlowDragonAdministrator

previous post

healthunlocked.com/thyroidu...

See if Ferritin is improving

Are you now taking a daily vitamin B complex as well as B12

You need to retest vitamin levels

Refuse to reduce dose based on TSH

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

LEVO DOSE SHOULD NOT BE DETERMINED BY TSH

Diogenes/Toft paper:

bmcendocrdisord.biomedcentr...

healthunlocked.com/thyroidu...

The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:

Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis

February 2020 Journal of Clinical and Translational Endocrinology 19:100219

DOI: 10.1016/j.jcte.2020.100219

LicenseCC BY-NC-ND 4.0

Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich

LlINK TO PAPER:

ncbi.nlm.nih.gov/pubmed/320...

PurpleKitty111 profile image
PurpleKitty111 in reply toSlowDragon

thank you. I will point him towards recommendations. I refused the dose drop last time so will now be able to give evidence on why if he pushes this time. He seems more clued up than most of the medical professionals I’ve seen! He did say we were going to test vitamins again this time but for some reason. They weren’t on the form.

I’ve not started a b complex yet as wanted to check vit levels. Still just on the B12. I doubt my levels would have gone up much though and was looking into B12 injections. With your previous advice I’m forearmed with how to sort dealing with supplements once get another test done and I have results.

Many thanks SlowDragon.

pennyannie profile image
pennyannie in reply toSlowDragon

Bigthensmallthenbig - plese read above links kindly supplied by SDragon re your comments to me the other day - on TSH

pennyannie profile image
pennyannie in reply topennyannie

Bigthensmallthenbig

Brightness14 profile image
Brightness14

I personally dont worry at all about doctors and their charts. Your results are fine, you could increase a little you FT3 is still to low to feel good. My TSH has been around 0..05 for years and I am fine with that. Hope you feel well soonest.

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