Help needed please!: Hi everybody. My first post... - Thyroid UK

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Help needed please!

EMTaylor profile image
8 Replies

Hi everybody. My first post here. A dear friend of mine introduced me to this forum and I've spent weeks reading posts and learning lots from all you knowledgeable people out there.

In May this year I went to my GP after feeling rotten for at least a year, just getting worse. Symptoms like incredible tiredness, low moods, acing everywhere, loosing hair, dry skin, "fussy" in the brain, forgetful and gaining lots of weight. I had my suspicion it could be problems with my thyroid. Test were taken and results were a little low, but ok according to the doctor. He thought I was depressed and run down due to too much work. A month later I was back with the same symptoms. New tests were taken, with better results according to the doctor. To keep me sweet he said new tests could be taken in the autumn.

Saw another doctor in August, who agreed my test results were fine, although a tiny bit low, but because of my symptoms she was willing to try me on a small dose of Levothyroxine, 25 mcg/ day.

Now 6 weeks on Levothyroxine have passed and I can't say I feel much better. New tests were taken this week and today I received a letter saying my thyroid results are now fine, no need to increase the medicine. The doctor is commenting on the B12 being a little low and suggests a new test in tree weeks. Meanwhile I feel dreadful. I've always been an energetic person and don't recognize myself. No energy, feeling depressed, constantly sleeping and can't loose any weight. Are the doctors right? My results are fine?

2016-05-18 at 9.40

TSH: 6,2 (0,4-3,7)

Free T4: 13 (12-22)

Hemoglobin: 127 (117-153)

2016-06-14 at 14.40

TSH: 2,7 (0,4-3,6)

Free T4: 11 (12-22)

Free T3: 4,2 (3,6-6,3)

Antibodies:

TPO: 13 (<34)

S-TSH-rec-ak (TRAK): <1,0 (<1,2)

2016-09-05 at 14.20

TSH: 1,7 (0,4-3,7)

Free T4: 14 (12-22)

Free T3: 4,9 (3,6-6,3)

Hemoglobin: 133 (117-153)

P-TIBC: 96 (47-80)

B12: 126 (150-500)

Folate: 22 (>8)

Ferritin: 49 (13-148)

Vitamin D3: 109 (>75)

Cortisol: 786 (no reference given)

Very grateful for any help I can get to understand these results! Sorry about the lengthy post!

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EMTaylor
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8 Replies
CarpaBob profile image
CarpaBob

Hello, I see some off your tests were in the afternoon and for thyroid these are best done first thing in the morning before fasting and with a 24 hrs gap from your last dose of thyroxine. That's why your second test appears better in terms of tsh. Your t4 is on the low side but I am still getting my head round those things so am sure more knowledgeable members will be able to give advice on that.

Your b12 is low and your folate is on the high side. High folate can mask symptoms of b12 deficiency.

b12deficiency.info/signs-an... check if you have any of the symptoms here and if so look into supplementing. You may have to battle with the doc's because it's still in the so called "normal" range. It's not necessarily your healthy normal range but many doc's won't consider this.

Ferritin is also on the low side, from what I have read it needs to be over 100 to assist with good conversion of thyroxine.

EMTaylor profile image
EMTaylor in reply to CarpaBob

Thank you so much for taking the time to answer me! I'll take a closer look at the B12 deficiency link you posted!

shaws profile image
shawsAdministrator

Welcome to our forum,

It is a pity that doctors only look at the TSH to make a decision, instead of the clinical symptoms.

First of all a dose of 25mcg of levothyroxine is a supplementary dose and an initial dose should be 50mcg. Sometimes when dose is too low it backfires. Your TSH results are lowish but we feel best when it's around 1 or lower and some need it to be suppressed.

Your FT4 and FT3 are too low and should be towards the upper part of the range. I would say you need a higher dose of levo. It is very unfortunate doctors don't take and don't know clinical symptoms.

TSH: 1,7 (0,4-3,7)

Free T4: 14 (12-22)

Free T3: 4,9 (3,6-6,3)

Your B12 is too low and you can supplement with vitamin B12 methylcobalamin sublingual tablets. The recommendation now is that around 1,000 is advised.

P.s. I responded to an earlier post which you might find helpful containing Dr Skinner's comments.

(I am not medically qualified but had undiagnosed/untreated hypothyroidism).

EMTaylor profile image
EMTaylor in reply to shaws

Thank you so much for taking the time to answer me! Read your suggested comments by Dr Skinner. So true!!! I try to learn more about my condition, so I know what to tell the doctor. I don't feel the doctors know very much about this at all. I even had one doctor google the condition when I was there!

Forest1000 profile image
Forest1000

Hi, your B12 result is not 'a little low' it's very low, check the Pernicious Anaemia website for lots of information about B12 deficiency and PA, symptoms and test results. All best wishes.

EMTaylor profile image
EMTaylor in reply to Forest1000

Thank you so much for taking the time to answer me!

I will take a closer look at the website you suggested.

swmartin profile image
swmartin

I'll reiterate what Forest said; Your B12 levels are VERY low. The 'normal' range of 150 to 500 is ridiculous! In Japan, the normal range STARTS at 500. Please start reading everything you can about Pernicious Anaemia and ask for the antibody tests (GP and IF) from your GP.

Your TIBC is high. The following from the NHS Choices website on TIBC (just in case your GP wants to start refusing tests, etc.) ...

" A total iron-binding capacity (TIBC or transferrin) test is used to measure the amount of iron in the body.

Transferrin is a glyco-protein that's found in blood plasma (the liquid part of blood). It's capable of binding iron and acts as a carrier for iron in the bloodstream.

If you have an iron deficiency (a lack of iron in your blood), your iron level will be low but your TIBC will be high.

If you have too much iron – for example, if you have a condition such as haemochromatosis, your iron level will be high but your TIBC will be low or normal.

As transferrin is produced by the liver, your TIBC level will also be low if you have liver disease."

Your ferritin levels are at the lowish end of the range too. You could have both a B12 AND an iron deficiency. Investigate both and good luck!

EMTaylor profile image
EMTaylor in reply to swmartin

Thank you so much for taking the time to answer me!

I will definitely pester the doctor for more tests. Now with ammunition ;)

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