Test Results

[Thyroiddown]

Please could you help me interpret test results

TSH - 15.9. (,2 -6)

Free T4 -. 12.5. (10-20)

TPO 1575. (under 60)

B12. - 423. (180-900)

Serrum folate - 8.99 ( over 5.4)

Vit D3 - 93. (50-100)

Also gamma GT 115. ( O-55

[SeasideSusie Remembering]

Thyroiddown

What dose of Levo are you on?

You are currently undermedicated, maybe a Hashi's Hypo swing. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

B12. - 423. (180-900)

Is the unit of measurement pmol/L or ng/L or pg/ml (ng/L and pg/ml are the same).

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Serrum folate - 8.99 ( over 5.4)

I'd want mine in double figures.

Vit D3 - 93. (50-100)

Just approaching the level recommended by the Vit D Council - 125nmol/L and the Vit D Society - 100-150nmol/L.

Also gamma GT 115. ( O-55

This is a liver test I believe, sorry I can't help with interpretation.

[greygoose in reply to SeasideSusie]

Actually, you don't have Hashi's hypo swings, as such. You have a sudden 'hyper' swing, when the levels go high, then they come down, through euthyroid, to hypo again. And, that's where they stay. You can't have a swing where you get more hypo - if you see what I mean. These results are probably under-medication. Although the TSH is rather high for 125 mcg levo, so there's probably a bit of poor conversion going on.

[LAHs in reply to SeasideSusie]

Thank you for bringing people's attention to UNITS! Units folks, they are very, very important.

[Thyroiddown]

I'm on 125mcg levythyroxine , Thank you

[SeasideSusie Remembering in reply to Thyroiddown]

You need an increase of 25mcg now, retest in 6-8 weeks.

What has your GP said about these results?

[Thyroiddown in reply to SeasideSusie]

He has told me I am the only patient he has ever had with Hashimotos, he also told me under 6 is where I should be , he sent me to endicrinology but the consultant there was not helpful, she said I was borderline between 8 and 15! and on the correct levythyroxine dosage and I shouldn't expect any improvement as obviously my thyroid isn't working and I will have to accept it at some point. I was referred to endicrinology but she is a general medicine specialist .

She told me to book a follow up 4 months later . I will ask the GP for a referral for a second opinion I'm not happy , also was this a full thyroid panel, its missing some tests?

[Greekchick in reply to Thyroiddown]

Hi Thyroiddown,

I am so sorry you were treated so poorly by that consultant endo. Please, run, don’t walk away from this woman - she can’t read bloodwork results that provide ranges and to tell you that you have to accept your thyroid not working is simply unacceptable. (You are missing the T3 results, I noticed). There are others on the forum much better at interpreting bloodwork results, but I was so shocked I had to write to you.

I wish you all the very best and hope you get your second opinion.

[SeasideSusie Remembering in reply to Thyroiddown]

Thyroiddown

He has told me I am the only patient he has ever had with Hashimotos

That's quite surprising as Hashi's is the most common cause of hypothyroidism.

he also told me under 6 is where I should be

He's right, it should be under 6, but what is the range? Many ranges are around 0.2-4.2 or maybe go up to 5, and we should be in range, but moreso at the lower end of the range.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

You can also refer to NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

he sent me to endicrinology but the consultant there was not helpful, she said I was borderline between 8 and 15! and on the correct levythyroxine dosage and I shouldn't expect any improvement as obviously my thyroid isn't working and I will have to accept it at some point.

As the above quotes show, borderline doesn't come into it for a treated hypo patient, the aim is to for TSH to be low in range with decent levels of thyroid hormone. The consultant obviously doesn't realise that replacement thyroid hormone should bring you back to as near "normal" as possible, it's not a case of "you have an underactive thyroid, live with it".

I will ask the GP for a referral for a second opinion I'm not happy

You can send for the list of thyroid friendly endos from Dionne - email above - then ask on the forum for feedback by private message on any that you can travel to, then ask for a referral to that specific endo. Most endos are diabetes specialists and unless you choose carefully you may end up no better off that at present.

also was this a full thyroid panel, its missing some tests?

No, a full thyroid panel is

TSH

FT4

FT3

TPO antibodies

Tg antibodies

but you already have confirmation of Hashi's so wouldn't need those testing again. Unfortunately, most doctors don't seem to understand the importance of testing FT3 along with the others, but this is what tells us how well we convert T4 to T3 - we see where FT4 and FT3 are in range and that tells us how well we convert.

[Thyroiddown in reply to SeasideSusie]

Thank you so much for all this which puts it all into perspective and gives me the way forward . I will make contact with Dionne tomorrow for the article and the list, and I will find a list of Hashimotos symptoms for my GP to read too.

As I am his only patient with Hashimotos and there are over a million plus of us in the UK , I suspect he may find he has a few cases in his practise untreated.

[SeasideSusie Remembering in reply to Thyroiddown]

I will find a list of Hashimotos symptoms for my GP to read too.

You may not find a list of symptoms specific to Hashimoto's. Because it gradually destroys the thyroid gland and eventually causes hypothyroidism, it's symptoms of hypothyroidism that you get.

Most doctors in the UK tend to call it autoimmune thyroid disease/autoimmune thyroiditis rather than Hashimoto's.

Here is a NHS article talking about thyroiditis and mentions Hashimoto's

nhs.uk/conditions/thyroiditis/

[vocalEK in reply to Thyroiddown]

I shouldn't expect any improvement as obviously my thyroid isn't working and I will have to accept it at some point.

That remark is so infuriating. You don't deserve to feel well? Don't bother trying to find a way to function better?

Would this consultant tell a diabetic that he is on the correct dose of insulin and should not expect any improvement because obviously his pancreas isn't working and he will have to accept it at some point?

[Thyroiddown in reply to vocalEK]

This consultant should not be managing Thyroid disease and does not understand the extent that the body can be affected , I can't wait to see her letter with feedback to my GP.

[Marz]

How do you take your Levo ? - on an empty stomach and wait an hour before eating or drinking - only water. Are you on any meds for the Fibro ? - could they be affecting the uptake of your levo ?

There's so much we can and have to do with Hashimotos - so am wondering if you have thought about being gluten free ? Your vitamins and minerals look good - do you supplement ? No Ferritin tested which if low could affect your conversion of T4 into the ACTIVE thyroid hormone T3. Low T3 can be linked to Fibro symptoms. Sadly rarely tested in the NHS. As your FT4 is low in range it often means the FT3 will be too.

Hope all goes well with the Neuro ?

[Thyroiddown in reply to Marz]

Hi and Thank you, I'm not in any meds for fibro I stopped taking them many years ago , I do take my levythyroxine at night on an empty stomach before bed.

I have been on a strict gluten and sugar free diet for 6 months now , initially I felt a little better but not for long.. I notice I am reacting/flaring to other grains such as rice, corn flour etc h . I will take a ferritin suppliment in case this is affecting T3 conversion.

I read my GP referral letter to endicrinology , he listed my symptoms incorrectly and he mentioned I may not be consistent in taking my levythyroxine .... Additionally he mentioned I was not born in the UK which is not true . I am currently bedridden with flare up, I need to get to the GP and correct the symptoms list and tell him I was in fact born here and request a neurology referral .

Last week I went to my first visit to MSK , Cats Dept, the physio examined me and said there is something very wrong with the right side if my body and is sending me for full spinal MRI .

[Marz in reply to Thyroiddown]

Please test Ferritin before supplementing. 😊 You are doing so many good things - it must be so frustrating on top of your GP getting so much wrong in the letter.

Once you have your new test results start a new thread for people to comment.

Hope you soon find answers and feel better ...

[salsapixie]

Sounds like endocrinology weren’t helpful. Mine wanted my TSH at the lower end of the range (2.5 or below and it was at 0.5 on last test) and T4 in the top end. 15 for TSH is high, you seem undermedicated. I’m sorry you have to wait for a second opinion now.

[LAHs]

Your Endo is useless. You might stand a chance with your GP if he is willing to take an interest in thyroid matters, if he does not then get another doc. You are seriously under medicated. You have 125 mcg tablets, that is going to be a little bit tricky to raise your dose to 130, but not impossible. You need to cut a tablet into 1/8 ths. This will provide you with an extra15, mcg which will raise your dose to 140 mcg. If you take this one day then take your 125 the next day and so on and so forth you will be taking an average of about 130 mcg. After about a week assess how you feel, if you feel well (I think you will probably still be under medicated at 130 mcg) then stay at that dose, if you still feel lousy repeat the above but take a quarter of the 125 pill extra in the alternate day pattern. This time take 1 1/4 pills on day one, then a 125 pill on day two then a 125 pill on day three. This will average down to about 135 mcg. Again, do this for about a week and see how you feel. If there is no change at this point you will have to measure your FT3 since you may be a bad converter, and that is the next story. But keep doing these raises until your TSH drops to about 1.5 or lower.

One little point to understand. You can do this averaging because the half life of Levo is 7 days but become familiar with the arithmetic we are applying so that you can smooth out the large one day dose over a number of days so that you do not get to the point where you are taking two pills one day followed by x days at 125. I think you get what I am trying to say.

[Thyroiddown in reply to LAHs]

Thank you , yes I can do this, I can't understand why endicrinology did not do a full thyroid panel, I did ask her to do this as my GP had not.

[DippyDame]

Important question Thyroiddown - "How are you feeling"? Not too well I suspect.

Yet, this endo is prepared to leave you be for another 4 months, she is clearly short of answers/knowledge.

How soul destroying to be told you shouldn't expect any improvement when even basic tests haven't been adequate.

Without an FT3 result we cannot see how well you are converting T4 to T3.

Many of us have private tests - this may be of interest

thyroiduk.org.uk/tuk/testin...

Your FT4 is low and suggests an increase is needed however, if your conversion is poor then increasing your levo is unlikely to help.....been there!

If conversion is poor you may benefit from the addition of T3.

Your TSH is rediculously high...others have advised on that.

You haven't been given advice....just the run around.

Those medics appear inept and more likely to cause problems than to solve them.

I would suggest as a starting point that you have an FT3 test done in addition to FT4 and TSH. GPs are often reluctant/refuse to do FT3 tests (see link above to private tests. Medichecks do Thursday discounts)

Many of us have found ourselves in a situation similar to yours I.e with medics who are clueless. Your journey to recovery starts here ...it did for me!

We are all here to offer support...just ask

Good luck

DD

PS. Just read your profile I might suggest many of your symptoms are related to low thyroid hormone particularly T3.

I was diagnosed with both fibro and CFS, many of my symptoms eased or disapeared as my thyroid hormone levels improved. I'm not quite optimal yet but very close.

I'm 74 so never lose hope!!

[Thyroiddown in reply to DippyDame]

Thank you! what your saying makes perfect sense, I am so brain fogged I can't think and exhausted /severe brain fog also ,and I have developed a droopy eye and mouth , this is a bee symptom .

I just checked out the blood tests , Thank you for this, I will do antibodies also, it is only an additional 15 pounds, I will wait for Thursday to see if they reduce the price.

I must get well as I am starting a new job middle of next month I can't do it feeling this ill.

Thank you for reading my profile, so you think most of my symptoms are Hashimotos symptoms , but, with my right side facial droop and right side only body pain, I thought I should also see neurology , and of course a second referral to another endocrinologist.

[DippyDame in reply to Thyroiddown]

Sensible to have the full thyroid panel checked.

Your B12 is low that won't adequately support neurological functions either. Seaside Susie knows a lot about nutrients.

A word of caution....sadly there is no quick fix for thyroid disease (think headache/paracetamol) however there is a fix so be prepared to be patient and determined to work through the recovery process. It is too easy to think after a few weeks that nothing is improving....been there!...just stick with it. That is how many of us have succeeded in turning our health around.

Like many here I self medicate....not so daunting as it sounds.

Knowledge is the key so read as much as you can....old posts here are valuable. Be discerning about what you read on-line. Use the search box at the top of the page to find specific topics.

Knowing there is a solution ahead should help to ease any stress involved.

There are many well informed members who will help....they know more about the thyroid than most medics. If it were otherwise this forum with over 100,000 members would not exist! Current (NHS) thyroid treatment is a scandal leaving too many patients struggling and desperate...it's a long sad story.

Post your results and advice will follow.

Good luck

DD