Levels??

[Minimouse1]

Had my levo increased from 100mg to 125mg in July. Instead of the usual 6wk re-test period my GP wanted to wait 3 months. Just been re-tested but for TSH only & my TSH is now 2.36 (range used 0.38-5.5). This has decreased as my levels done in July which were 5.37. This would indicate that I'm in a good range now would it not? So does anyone have any ideas why I still feel tired & am suffering badly with anxiety - which consequently I did not suffer from before?????

[SeasideSusie Remembering]

Minimouse1

This would indicate that I'm in a good range now would it not?

Testing TSH only is not an indicator of thyroid status. Yes, the increase in Levo has lowered your TSH, which is to be expected, but to know your actual thyroid hormone levels you need FT4 and FT3 testing.

The aim of a hypo patient generally, when on Levo, 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.

So you're not in a good range now, your TSH is still far too high, who knows what your FT4 and FT3 are and these really should be standard tests every time.

So does anyone have any ideas why I still feel tired & am suffering badly with anxiety - which consequently I did not suffer from before?????

You are still hypothyroid, your TSH result tells you that. You need another increase, 25mcg now and retest in 6-8 weeks' time. And you should try and educate your GP that FT4 needs to be done, preferably FT3 as well. If your GP can't get them done, consider doing them yourself which so many of us here have to do, we have recommended labs that do home fingerprick tests.

If your GP isn't happy to increase your dose of Levo, use the following information to support your request:

"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

[Minimouse1 in reply to SeasideSusie]

Hi again, back in July my GP was going to leave me with a TSH of 5.37 with no further action. I wrote to them begging for an increase (which they did). At that time i used all the evidence you sent me to instigate that 25mg increase. However the GP seems to think that the levels suggested in the evidence you provided only apply to women of child bearing age. The actual lab report which came back from the hospital stipulates as follows:

THYROID FUNCTION

Serum TSH level 2.36 mIU/L [0.38 - 5.5]

In women of childbearing age on Thyroxine, aim for

a TSH level of 0.38-2.5 mIU/L in the

preconception period and 1st trimester of

pregnancy and a level of 0.38-3.0 mIU/L in the

2nd and 3rd trimesters

I've queried this directly with NICE who replied saying they are not aware of this advice & if this is taken from written information then ask my GP where it is from. Although clearly it's from the lab!!

Do you know how I might challenge this?? I'm 49yrs old, so definitely not child bearing age.

I think a private test is my only way of knowing what is going on with me at present, however if things are not all well then getting my GP to consider the private tests might prove very difficult considering what has happened so far.....

[SeasideSusie Remembering in reply to Minimouse1]

However the GP seems to think that the levels suggested in the evidence you provided only apply to women of child bearing age. The actual lab report which came back from the hospital stipulates as follows:

THYROID FUNCTION

Serum TSH level 2.36 mIU/L [0.38 - 5.5]

In women of childbearing age on Thyroxine, aim for

a TSH level of 0.38-2.5 mIU/L in the

preconception period and 1st trimester of

pregnancy and a level of 0.38-3.0 mIU/L in the

2nd and 3rd trimesters

Oh my goodness! Is your doctor stupid or what!?! I thought they had to be well educated and had degrees. I am beyond gobsmacked!

Some labs automatically include ranges for pre-conception and pregnant women - have a look at the photo attached in the first post in this thread which must be very similar to your lab report wher it gives reference ranges for the 1st, 2nd and 3rd trimester:

healthunlocked.com/thyroidu...

It doesn't include pre-conception reference range, but it is well known - or should be to doctors - that for successful conception TSH needs to be below 2.5

So, what - in your lab's report - does your doctor not understand in the last sentence you have quoted. It clearly states the range for pre-conception and first trimester, and the range for 2nd and 3rd trimester. Does your stupid doctor not realist that this only applies to women who are considering pregnancy or are actually pregnant. Honestly, I just can't get my head around why your GP cannot understand this from that sentence. I understand it and I haven't been to med school, and I haven't got a degree. All I have is common sense, logic and 4 old fashioned GCEs from the 1960s.

I agree with NICE - ask your GP to provide you with written proof or a link to where he has got the information that those ranges apply to non-pregnant females. Ring the lab yourself, it's probably at your local hospital (or ask at your surgery where the blood is tested), ask the lab technican if those ranges apply to non-pregnant females. When she tells you that they only refer to pregnant women then ask if they will send proof to your GP, or will they speak to the GP to explain that.

Dr Toft's article, and the information from Leeds Teaching Hospital, is general information for non-pregnant patients.

Better still, find a doctor who isn't as stupid as this one.

Geez, just when you thought you'd heard it all ........... walks away, shaking head!

[Minimouse1 in reply to SeasideSusie]

I'm afraid I'm not much use myself at the moment as I'm so muddled in the head but I don't know what my GP's excuse is!! I will try & get the lab to help me on this one! 😏

[shaws Administrator in reply to Minimouse1]

I do wish they would take more notice of clinical symptoms rather than the TSH result. Consdiering it is from the pituitary gland which rises as our thyroid gland is flagging. SeasideSusie has been explicit in her resonse and I definitely agree with her. We find so many incompetent doctors and it's not their fault that they seem to be told to only look at a TSH result and, in the UK, that it has to reach to 10 before prescribing. In other countries they're diagnosed when TSH is around 3+ with symptoms. Mine had to reach 100 and I had to diagnose myself.

[Minimouse1 in reply to shaws]

Hi Shaws, how did you get incorrect treatment of you had to take care of your own diagnosis & treatment tax? If I can't get my GP to increase my levo again then I'm seriously considering doing private bloods & getting extra medication from elsewhere to add to my current prescription dose. However I'm worried if I do this & I become unwell then the GP won't help!!

[SlowDragon Administrator]

Looking at previous posts, I think you have had antibodies tested and high antibodies confirm you have Hashimoto's

When were vitamin D, folate, ferritin and B12 last tested?

What vitamin supplements do you currently take?

Are you on strictly gluten free diet or dairy free diet?

Anxiety is a common hypothyroid symptom

Your next step is likely to get FULL Thyroid and vitamin testing privately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Just testing TSH is completely inadequate

Come back with new post once you get results and members can advise on next steps

Assuming you need dose increase in Levothyroxine....either ....

See a more educated GP

Or email Dionne at Thyroid UK for list of recommended thyroid specialists

thyroiduk.org.uk/tuk/About_...

[SlowDragon Administrator]

Just a thought......

Do you always get same brand of Levothyroxine ?

[Minimouse1 in reply to SlowDragon]

Usually yes. I have 100micrograms of Actavis & 25micrograms of Wockhardt, however the 100 tablets were swapped for MercuryPharma last month but I thought actavis & mercury were the same company???

[SlowDragon Administrator in reply to Minimouse1]

No, Activis and Mercury aren't same

here's list of UK brands of tablets

thyroiduk.org.uk/tuk/treatm...

[Minimouse1 in reply to SlowDragon]

I haven't actually started taking the new 100 microgram tablets from MercuryPharma yet so the anxiety etc can't be due to a change in brand, but thanks for letting me know that they're not the same as Actavis because it has brought to my attention that they contain Acacia which I'm sure made me itch like mad before & I got a rash. Is it likely my GP will give me a replacement prescription now that I've collected them & my prescription has been fulfilled though??

[Stourie in reply to SlowDragon]

Hi, sorry to butt in but is there a shortage of Mercury Pharma just now. My chemist said that they were having trouble getting it. Jo xx

[SlowDragon Administrator in reply to Stourie]

They are forever saying rubbish like that......what they mean is they can't be bothered....they don't get paid to source different brands, so only want to offer what's on the shelf

Getting paper prescription enables you to try numerous different pharmacies. Small independent ones often more helpful

[Stourie in reply to SlowDragon]

Hi, thank you for replying so quickly. It is a small pharmacy that I use and they are usually very good. They have on their notes that I don't like teva anything, and I was given MP the first time but actavis this time and don't feel so good on it. Just a bit more "down". I have been on t3 for years but they are trying to lower the dose very slowly and add some t4 which I don't mind as I had started to not feel quite so good. I'll ask the dr to put MP on the next prescription. Thanks again. Jo xx